You are on page 1of 11

FEATURE

Effects of a Continuous Care Model on Patients’ Knowledge


and Health-Related Quality of Life in Systemic Lupus
Erythematosus
Mohammad Sahebalzamani1, PhD, Hojjatollah Farahani2, PhD, Mojgan Tabatabaee Jamarani1, MSc,
Seyedeh Tahereh Faezi3, MD, Kamran Moradi3, MD & Pedram Paragomi3, MD
1 Department of Nursing and Midwifery, Tehran Medical Sciences Branch, Islamic Azad University, Tehran, Iran
2 Department of Psychology, Tehran Medical Sciences Branch, Islamic Azad University, Tehran, Iran
3 Rheumatology Research Center, Tehran University of Medical Sciences, Tehran, Iran

Keywords Abstract
Self-care; continuous care; quality of life;
systemic lupus erythematosus; self-manage- Purpose: The purpose of this study was to evaluate the effects of applying con-
ment. tinuous care model (CCM) on the knowledge level and health-related quality
of life (HRQoL) of systemic lupus erythematosus (SLE) patients and their per-
Correspondence ceptions of family awareness about the disease.
Mojgan Tabatabaee Jamarani, Department of
Design: Continuous care model was implemented for 3 months on 34 SLE
Nursing and Midwifery, Tehran Medical
patients, in a pretest–posttest quasi-experimental design.
Sciences Branch, Islamic Azad University,
Tehran, Iran.
Methods: Two sets of questionnaires were designed for knowledge assessment.
E-mail: m.jamarani@yahoo.com HRQoL was assessed by SF-36 questionnaires. Analysis was by paired t-test and
one-way ANOVA.
Accepted April 20, 2016. Findings: Continuous care model significantly improved patients’ knowledge
level and their perceptions of their family members’ awareness of their disease.
doi: 10.1002/rnj.283
HRQoL status in SLE patients was poorer than the general population in six of
eight SF-36 scales (p < .05), except for Bodily Pain and Mental Health. Postin-
tervention scores showed improvement in six SF-36 scales (p < .001), except
for Bodily Pain and Social Functioning.
Conclusions: Our results underlined the advantages of applying CCM as a
comprehensive method of self-care in SLE.
Clinical Relevance: Despite many improvements in SLE care the patients’ qual-
ity of life is still much affected by SLE. Implementation of CCM could lead to
improvement in the knowledge and HRQoL of SLE patients.

(Davatchi et al., 2008, 2009). Reports show that the clini-


Introduction
cal picture and the natural history of the disease are highly
Systemic lupus erythematosus (SLE) is a chronic autoim- varied in patients from different geographical areas and
mune disease (O’Neill & Cervera, 2010) with prevalence ethnic backgrounds (Akbarian et al., 2010). SLE involves
rates ranging from 20 to 150 cases per 100,000 in different multiple organ systems during its course (Mak, Isenberg,
populations (Akbarian et al., 2010; D’Cruz, Khamashta, & & Lau, 2013; Smith & Gordon, 2010). SLE patients also
Hughes, 2007; Pons-Estel, Alarcon, Scofield, Reinlib, & face a multitude of physical, psychological, and social
Cooper, 2010). According to the Community Oriented challenges in the course of their illness (Yazdany & Yelin,
Program for Control of Rheumatic Diseases (COPCORD) 2010). Consequently, SLE management warrants substan-
report in Iran (see http://www.copcord.org/index.asp for tial direct and indirect costs (Lau & Mak, 2009).
additional information), SLE is estimated to have a preva- Despite many improvements in patient care, patients
lence of 40–60 cases per 100,000 in the Iranian population frequently suffer from long-term SLE-associated

© 2016 Association of Rehabilitation Nurses


Rehabilitation Nursing 2016, 0, 1–11 1
Continuous Care Model in SLE M. Sahebalzamani et al.

morbidities. These comorbidities stem from many SLE- patients and their families to play an active role in the
related factors that include chronic fatigue, pain, arthritis, treatment process and enables patients to control their
and renal involvements. The patients’ quality of life and chronic disease more effectively (Walker et al., 2012).
his/her ability to work is very much affected by SLE (Lau Therefore, it is essential to educate the patients and their
& Mak, 2009; Longo et al., 2011; Pons-Estel et al., 2010). families about health-related issues and stress their role in
There are many reports about the influence of SLE on self-care.
the health-related quality of life (HRQoL), particularly Delivering continuous care involves providing regular
when the disease is active in patients (Schmeding & Sch- care to the patients in a consistent manner to build an
neider, 2013; Thumboo & Strand, 2007). Kulczycka, Sysa- effective and interactive communication between the
Jedrzejowska, and Robak (2010b) have also shown the patient as the continuous care agent and the nurse as
effect of SLE on the quality of life even in the primary the healthcare provider. The continuous care model
stages of the disease or when it is in remission. The psy- (CCM) was first introduced and validated in Iran as a
chosocial, disease-related, and treatment-related factors method of providing care to the patients with chronic
are believed to influence the patient’s quality of life in coronary artery disease (Ahmadi, 2001; Molazem et al.,
SLE (Navarrete-Navarrete et al., 2010). By improvements 2013). CCM helps the healthcare system identify the
in the survival of patients in recent decades, the need for patient’s problems and needs, further sensitizes the
more comprehensive self-care programs and prevention patient to better accept healthy behaviors, and conse-
strategies as well as educational programs to improve the quently helps the patient to maintain healthy behaviors
HRQoL has become more prominent in SLE (Schmeding and improve his/her condition of health. CCM is consid-
& Schneider, 2013; Thumboo & Strand, 2007). ered to be a suitable model of providing care to patients
Regular follow-up visits to the clinic and patient’s with chronic diseases. Constructing an active and effec-
involvement in the process of clinical decision making are tive relationship with the patient to provide continuous
considered to be two effective strategies to promote care is the main feature of CCM and is very much com-
healthy behaviors and improve clinical outcomes patible with the characteristics and needs of patients suf-
(Lejbkowicz, Caspi, & Miller, 2012; Walker, Hernan, fering from chronic diseases and the dynamic nature of
Reddy, & Dunbar, 2012). Self-management strategies are their problems (Ahmadi, 2001; Molazem et al., 2013;
the mainstay of treatment for patients suffering from Rahim, Alhani, Ahmadi, Gholyaf, & Akhoond, 2009).
chronic diseases. However, available educational materials Consequently, CCM can play a major part in prevention
in rheumatic diseases do not match patients’ literacy. of disease progress and developing complications.
Hence, they do not efficiently improve patients’ under- In this study, we evaluated the impact of applying
standing about their disease, its sequelae, and the treat- CCM in SLE as a model for a chronic autoimmune dis-
ment process (Rhee, Von Feldt, Schumacher, & Merkel, ease. The objective was to evaluate the impact of CCM
2013). Studies have unraveled the correlation between on the knowledge level of the patients, their perception of
lower literacy and poor self-evaluation of health status their families’ awareness about the disease, and its impact
(Berkman et al., 2011). Moreover, it has been shown that on the HRQoL of patients.
self-care education improves self-confidence and prevents
frequent hospitalizations and psychological stress in
Materials and Methods
patients with chronic diseases (Sahebalzamani, Zamiri, &
Rashvand, 2012). According to Pai (2010) patients’ edu-
Study Design and the Participants
cation may decrease treatment-related symptoms while
improving health status and the quality of life in patients. To evaluate the effects of applying CCM in SLE patients,
Currently, most educational materials for rheumatic dis- we performed a quasi-experimental study in a group of
eases are designated for above eighth grade level of liter- SLE patients in a multidisciplinary clinic dedicated to SLE
acy (Rhee et al., 2013). In addition, regular follow-up that is associated with the Rheumatology Research Center
visits are considered to help the healthcare provider deli- (RRC) at Tehran University of Medical Sciences. We cal-
ver an active and continuous care to the patients with culated a sample size of 33 patients for a significance level
chronic diseases (Ahmadi, 2001; Molazem, Rezaei, of .05 and a power of 80%. The participants who fulfilled
Mohebbi, Ostovan, & Keshavarzi, 2013; Piatt et al., 2006). the inclusion/exclusion criteria for the study were selected
It has been shown that regular follow-ups help both the from our SLE clinic at Shariati Hospital. To account for

© 2016 Association of Rehabilitation Nurses


2 Rehabilitation Nursing 2016, 0, 1–11
M. Sahebalzamani et al. Continuous Care Model in SLE

potential drop-outs 41 patients were recruited, but only behaviors. (4) Evaluation stage was intended to reevalu-
34 completed the study protocol. ate the process of care and consider the achievements
The study was approved by the Research Ethics Com- and failures in the process of patient care (see Table 1
mittee at Islamic Azad University, Tehran Medical for a summary).
Sciences Branch. The aim and the protocol of the study
were described to the patients and informed written con-
Assessments
sents were signed by all the participants before inclusion
in the study. The study was performed under the supervi- Knowledge Questionnaires
sion of a rheumatologist at RRC. We conducted CCM for The knowledge questionnaires consisted of two sections
a period of 3 months. Patients aged 16 years or older that were filled in by the patients. The first section was
who were diagnosed with SLE according to the diagnostic related to the patient’s knowledge and the second section
criteria by the American College of Rheumatologists addressed the patient’s perception of family awareness
(Hochberg, 1997; Tan et al., 1982) were eligible for par- and their knowledge about the disease.
ticipation in the study. Patients who were unwilling to The first section was comprised of 51 items addressing
participate or unable to comply with the study protocol the patient’s knowledge about SLE-related healthcare
were excluded. Patients with known psychiatric illnesses issues, the nature of the disease, exacerbating factors, diet,
or difficulty in learning or/and accepting the provided physical activity, administered drugs, and continuation of
educations were also excluded from the study. We treatments. The items conformed with a three-point Lik-
launched the study in September 2012 and concluded it ert scale that comprised three response options as “true,”
in April 2013. “false,” or “I don’t know.” Each “true” answer was scored
+1, “false” answer was scored 1, and “I don’t know”
response was scored 0. The cumulative scores for each
Intervention
patient were calculated and categorized as low (≤18),
Continuous care model, by definition (Ahmadi, 2001), is intermediate (19–34), or high (35≤).
the systematic process of providing an effective, interac- The second section was comprised of 13 items address-
tive, and continuous relationship with the patient. ing the patient’s perception of their families’ awareness
Ahmadi (2001) introduced and validated CCM for the about their disease. The following are examples of items
first time in coronary artery disease patients. Providing included in this section: “All my family members are
continuous care is the central part of CCM and building aware of my illness,” “My family is aware of the exacerbat-
a continuous and effective relationship between the ing factors in my illness,” and “My family knows about
nurse, the patient, and his/her family is regarded in it as the potential side effects of my drugs.” Items in the second
an essential part in the process of reaching a mutual section were also conformed to a three-point Likert scale
understanding and acceptance in patient care. The nurse that was comprised of “yes,” “no,” or “to some extent” as
recognizes the needs and problems of the patients, sensi- response options. Answers were scored as +2 for “yes,” +1
tizes them to better accept and maintain healthy behav- for “to some extent,” and 0 for “no.” Final scores for this
iors, and helps the patients in improving and section of the questionnaire were categorized as low (1–9),
maintaining their health status. In this study, we applied moderate (10–18), and high (19–26) for each patient.
the four stages of CCM (i.e., orientation, sensitization, Reliability of the knowledge questionnaires for this
control, and evaluation) to individuals with SLE. (1) sample as measured by Cronbach’s a coefficient were
Orientation stage was the first step which intended to equal to .89 and .75 for the first and second sections of
explain the different stages of the model to the patients the questionnaire, respectively. The overall Cronbach’s a
and their families and set the requisite arrangements. (2) coefficient for the knowledge questionnaires (i.e., consid-
Sensitization was intended to increase awareness and ering together the first and second sections of the knowl-
involvement of the patients and their families about SLE edge questionnaire) was equal to .83.
and the process of self-care by providing educational
materials about SLE and arranging discussion sessions Health-Related Quality of Life (HRQoL)
with the patients and their families. (3) Control stage According to Thumboo and Strand (2007) SF-36 Health
was intended to evaluate the quality of care received by Survey is currently the best generic instrument available
the patients and reinforce and internalize the healthy for the evaluation of HRQoL in SLE patients. Eight scaled

© 2016 Association of Rehabilitation Nurses


Rehabilitation Nursing 2016, 0, 1–11 3
Continuous Care Model in SLE M. Sahebalzamani et al.

Table 1 Stages, objectives, and interventions in the continuous care model (CCM)

Stages Objectives Intervention

1. Orientation • Introducing the patients and their families • Knowledge questionnaires


to the training nurse and explaining the • SF-36 Health Survey
ways of communication that are available
to the patients
• Explaining the different stages of the
model to the patients
• Clarifying the mutual expectations
2. Sensitization • Making the patients and their • Holding educational classes (lecture sessions,
families involved in the process of discussion and question-and-answer sessions)
continuous care as well as personal counselling sessions for the
• Explaining the nature of the disease, patients and their families in four weekly sessions
its complications and the limitations each lasting about two and a half hours:
to the patients and their families o First session: Greetings and introduction,
• Elucidating the chronic course of the providing a comprehensible explanation about
disease the chronic nature of SLE, its definition,
• Improving the patients and their etiology, signs and symptoms, proper ways of
families’ knowledge and awareness about dealing with the associated sequelae and
self-care behaviors and consequently exacerbating factors, the importance and
ameliorating the patients’ quality of life benefits of tele-counseling and discontinuation
of bad habits and addressing patients and
their families questions while putting more
emphasis on the risk factors
o Second session: Providing an explanation about
the major drug classes used in SLE, the
importance of adherence to treatment and
different ways of administration of drugs in SLE
o Third session: Providing an explanation about
the importance of maintaining a proper diet,
commitment to a physical activity schedule and
introducing some physical activity routines to
the patients
o Fourth session: Providing an explanation about
the importance of commitment to a regular
follow-up schedule and following the physician’s
advice, recommendations for skin care, dealing
with fatigue and musculoskeletal pain, the
importance of stress reduction and introducing
stress reduction techniques to the patients.
Educational CDs and booklets were provided
to the patients at the end of this session.
3. Control • Internalization and continuation of • Weekly telephone calls (8 weeks)
healthy behaviors to promote health
4. Evaluation • Evaluation of the patient’s care • Knowledge questionnaires (second time)
process (achievements and failures) • SF-36 Health Survey (second time)
• Reassessment of the patients after
implementation of the model

scores related to the quality of life are included in the represents the best state of health (Bullinger et al., 1998).
SF-36 Health Survey (Ware, 2000). The SF-36 scales Based on the Cronbach’s a coefficient, internal consisten-
include Physical Functioning (PF), Role-Physical (RP), cies of 77%–90% in Iran and 65%–95% in other countries
Bodily Pain (BP), General Health (GH), Vitality (VT), have been reported for the SF-36 questionnaire (Montaz-
Social Functioning (SF), Role-Emotional (RE), and Men- eri, Goshtasebi, Vahdaninia, & Gandek, 2005).
tal Health (MH). For each scale, the scoring is on a range Participants were asked to fill in the questionnaires
of 0–100 in which 0 represents the worst and 100 before entering the study. After 2 months of follow-up

© 2016 Association of Rehabilitation Nurses


4 Rehabilitation Nursing 2016, 0, 1–11
M. Sahebalzamani et al. Continuous Care Model in SLE

via telephone, the patients filled in the questionnaire for Table 2 Demographic variables and characteristics of SLE
the second time. The participants were asked to fill in the patients
questionnaires at RRC, where proper instructions about Variable No. Min Max Mean SD
the questionnaires were provided to them. They were
assured that the information obtained from the study will Age 34 17 62 37.64 12.77
Age of disease onset 34 12 44 25.47 9.19
be treated in the strictest confidence. In cases of difficulty,
Time from diagnosis (years) 34 1.4 32 9.83 7.81
the participants could ask for further assistance.
Variable Subgroups No. %
Additional Variables Sex Female 32 94.1
Demographic features evaluated in the study consisted of Male 2 5.9
age, age of disease onset, time from diagnosis, sex, marital Marital status Married 21 61.8
status, level of education, employment status, monthly Single 13 38.2
income, and place of residence. Moreover, we recorded Employment status Employee 9 26.5
the patients’ home condition regarding the people who Homemaker 19 55.9
Student 6 17.6
lived with them, the householder, and the presence of
Level of education <High school 11 32.4
positive familial history for SLE. Moreover, patients’ High school 10 29.4
habits and attitudes toward exercise, and use of stress- University 13 38.2
reducing techniques were evaluated. Monthly income (Rials) <5,000,000 rials 9 26.5
5,000,000–10,000,000 16 47.1
rials
Analysis >10,000,000 rials 9 26.5
Place of residence Tehran 30 88.2
To compare the difference between preintervention and
Tehran’s periphery 4 11.8
postintervention scores, paired t-test was used. Compar-
Householder Patient 7 20.6
isons for independent variables were by independent Spouse 17 50.0
t-test. We applied one-way analysis of variance (ANOVA) Parents 10 29.4
to evaluate the impact of demographic features on the People who live Spouse and children 24 70.6
measured outcomes before and after the intervention. with the patient Parents 10 29.4
Pearson’s correlation coefficient was used to measure the Exercise status Always 6 17.6
correlation of quantitative features like patients’ age, age Occasionally 15 44.1
Rarely 8 23.5
of disease onset, and time from diagnosis with the out-
Never 5 14.7
come measures (i.e., patients’ scores for the knowledge
Use of stress Always 3 8.8
questionnaires and SF-36 Health Survey). The significance reduction Occasionally 4 11.8
level for p-values was set at <0.05. techniques Rarely 8 23.5
Never 19 55.9
Positive familial Yes 6 17.6
Results history for SLE No 28 82.4

Patient Characteristics No., number; Min, minimum; Max, maximum; SD, standard
deviation.
A total of 41 patients fulfilled the inclusion criteria for
participation in the study and were willing to participate. (p = .861, .734), sex (p = .283, .209), marital status
Four patients later rejected to participate in the study and (p = .348, .457), level of education (p = .605, .395),
three were lost to follow-up. Overall, 34 patients com- employment status (p = .547, .246), monthly income
pleted the total period of follow-up. The demographic (p = .474, .999), place of residence (p = .784, .120), the
features of our studied population are demonstrated in patients’ home condition regarding the people who lived
Table 2. with them (p = .286, .508), the householder (p = .333,
Our results showed no significant associations between .741), the presence of positive familial history for SLE
the patients’ knowledge scores before and after the imple- (p = .752, .477), exercise status (p = .782, .797), and use
mentation of CCM with the age (p = .506, .366), age of of stress reduction techniques (p = .617, .175) before
disease onset (p = .196, .931), time from diagnosis enrollment in the study. There were also no significant

© 2016 Association of Rehabilitation Nurses


Rehabilitation Nursing 2016, 0, 1–11 5
Continuous Care Model in SLE M. Sahebalzamani et al.

associations between the mean scores for the patient’s significantly improved in 3 months after the initial enroll-
perception of family awareness before and after the ment (p < .001, see Table 3).
implementation of CCM with the age (p = .144, .956),
age of disease onset (p = .141, .618), time from diagnosis
Secondary Outcomes
(p = .555, .667), sex (p = .075, .399), marital status
(p = .213, .179), level of education (p = .057, .438), Comparison of the Patients’ Baseline Quality of Life Scores
employment status (p = .248, .246), monthly income with the General Population
(p = .381, .602), place of residence (p = .845, .363), the The comparison of mean quality of life scores of the
patients’ home condition regarding the people who lived patients at baseline with the general population is shown
with them (p = .492, .153), the householder (p = .622, in Table 4. General population scores were obtained from
.101), the presence of positive familial history for SLE a survey by Montazeri et al. (2005) on a sample of 4,163
(p = .105, .793), exercise status (p = .427, .974), and use residents of Tehran who were ≥15 years old at the time
of stress reduction techniques (p = .944, .909) prior to of the study. The mean scores were lower for SLE patients
enrollment in the study. in all eight scales of SF-36 Health Survey. The mean
Moreover, the patients’ quality of life scores, before scores were significantly lower in six scales including PF,
and after the implementation of CCM, had no significant SF, RP, RE, VT, and GH for the SLE patients compared
associations with their age (p = .803, .394), age of disease to the general population (p < .001, see Table 4). How-
onset (p = .492, .189), time from diagnosis (p = .499, ever, the difference in mean scores was not statistically
.663), sex (p = .211, .605), marital status (p = .154, .744), significant for BP (p = .694) and MH (p = .856) compo-
level of education (p = .710, .222), employment status nents (Table 4).
(p = .646, .686), monthly income (p = .573, .311), place
of residence (p = .248, .848), the householder (p = .392, Changes in the Quality of Life Scores After the Intervention
.507), the presence of positive familial history for SLE After 3 months of implementing CCM, improvements
(p = .308, .343), exercise status (p = .955, .829), and use were seen in six scales related to the quality of life
of stress reduction techniques (p = .435, .681) prior to according to SF-36 Health Survey. The improvements
enrollment in the study. Meanwhile, the patients who were observed in the scales related to PF, RP, RE, VT,
lived with their parents reported significantly better QoL GH, and MH (p < .001, see Table 5). The difference in
compared to the people who lived with their spouse and mean scores for BP (p = .231) and SF (p = .869) scales
children prior to enrollment in the study (p = .039). This was not statistically significant. The greatest amount of
difference did not remain significant after the interven- improvement was observed in RE (mean differ-
tion (p = .496). ence = 28.51, p < .001, see Table 5).

Primary Outcomes Discussion

Postintervention Changes in the Knowledge Scores Rheumatic diseases exert mental, social, and physical
The mean scores for the patients’ knowledge and their adversities (Arvidsson, Arvidsson, Fridlund, & Bergman,
perception of family awareness about the disease 2011) that lead to lower HRQoL in patients (Salaffi,

Table 3 Comparison of mean scores for the knowledge questionnaires at baseline and after 3 months of implementing the con-
tinuous care model

Preintervention Postintervention Difference in Mean


Variable Scores (Mean  SD) Scores (Mean  SD) Scores* (95% CI) Effect Size p-Value

Patients’ knowledge 3.02  5.31 26.85  14.18 23.82 (18.84–28.80) 0.742 <0.001
Families’ awareness 15.91  7.04 22.64  4.84 6.73 (4.30–9.16) 0.492 <0.001
(Patients’ perception)

CI, confidence interval; SD, standard deviation.


*Difference in postintervention scores compared to the preintervention scores.
The comparison of postintervention scores with the preintervention scores was performed by paired sample t-test.

© 2016 Association of Rehabilitation Nurses


6 Rehabilitation Nursing 2016, 0, 1–11
M. Sahebalzamani et al. Continuous Care Model in SLE

Table 4 Comparison of quality of life scores of the patients before implementing the continuous care model with the mean
quality of life scores in the general population according to SF-36 Health Survey

Difference in Mean
General Patients’ Scores for the
Population Preintervention Patients and the
Scores Scores General Population
Variable (Mean  SD) (Mean  SD) (X l0) p-Value

PF 85.3  20.8 59.85  26.29 25.45 <0.001


RP 70.0  38.0 29.41  25.72 40.59 <0.001
BP 79.4  25.1 76.47  43.05 2.93 0.694
GH 67.5  20.4 42.15  17.37 25.35 <0.001
VT 65.8  17.0 52.50  20.78 13.20 <0.001
SF 76.0  24.4 50.36  13.92 25.64 <0.001
RE 65.6  41.4 28.43  31.92 37.17 <0.001
MH 67.0  18.0 66.17  26.25 1.17 0.856

PF, Physical Functioning; RP, Role-Physical; BP, Bodily Pain; GH, General Health; VT, Vitality; SF, Social Functioning; RE, Role-Emo-
tional; MH, Mental Health; SD, standard deviation.
The comparison of preintervention scores with the general population was performed by paired sample t-test.

Table 5 Comparison of mean scores for SF-36 Health Survey questionnaires before and after 3 months of implementing the
continuous care model

Preintervention Postintervention Difference


Scores Scores in Mean
Variable (Mean  SD) (Mean  SD) Scores* (95% CI) Effect Size p-Value

PF 59.85  26.29 85.58  16.64 25.73 (15.66–35.80) 0.450 <0.001


RP 29.41  25.72 56.66  32.18 27.25 (15.39–39.10) 0.399 <0.001
BP 76.47  43.05 61.76  49.32 14.71 ( 9.78–39.20) 0.043 0.231
GH 42.15  17.37 62.62  15.40 20.47 (12.38–28.55) 0.446 <0.001
VT 52.50  20.78 72.05  13.20 19.55 (11.04–28.07) 0.398 <0.001
SF 50.36  13.92 50.00  5.33 0.367 ( 4.12–4.85) 0.001 0.869
RE 28.43  31.92 56.95  39.67 28.51 (13.62–43.41) 0.315 <0.001
MH 66.17  26.25 90.14  21.44 23.97 (13.80–34.14) 0.411 <0.001

PF, Physical Functioning; RP, Role-Physical; BP, Bodily Pain; GH, General Health; VT, Vitality; SF, Social Functioning; RE, Role-
Emotion; MH, Mental Health; CI, confidence interval, SD, standard deviation.
*Difference in postintervention scores compared to the preintervention scores.
The comparison of postintervention scores with the preintervention scores was performed by paired sample t-test.

Carotti, Gasparini, Intorcia, & Grassi, 2009; Salaffi, Sarzi- quality of life in SLE has been introduced as comparable
Puttini, et al., 2009). Meanwhile, a considerable propor- to other serious medical conditions such as hyperten-
tion of patients do not have enough knowledge about sion, diabetes, myocardial infarction, Sjogren syndrome,
their disease, its sequelae, and the therapeutic course. congestive heart failure, rheumatoid arthritis, and psori-
Patients’ health literacy is a major obstacle in the chronic atic arthritis (Jolly, 2005; Thumboo & Strand, 2007).
diseases as far as the best medical management is con- In this study, after 3 months of applying CCM on SLE
cerned (Williams, Baker, Parker, & Nurss, 1998). patients, their knowledge and their perception of family
Our results revealed that before use of CCM, SLE awareness about SLE demonstrated significant improve-
patients had lower scores in six SF-36 scales compared ment. Moreover, six of eight SF-36 scales (Physical Func-
to the general population. Previous studies support a tioning, Physical Role Functioning, General Health,
lower HRQoL in individuals with SLE (Arvidsson et al., Vitality, Emotional Role Functioning, and Mental Health)
2011; Navarrete-Navarrete et al., 2010). The reduced were significantly improved.

© 2016 Association of Rehabilitation Nurses


Rehabilitation Nursing 2016, 0, 1–11 7
Continuous Care Model in SLE M. Sahebalzamani et al.

The role of nursing care and education on patient the impact of physical health or emotional problems on
knowledge has previously been evaluated in patients suf- social activities (Ware & Sherbourne, 1992). According
fering from autoimmune diseases who were hospitalized to Ware and Sherbourne (1992), low scores in SF sub-
for steroid pulse therapy (Pai, 2010). This study stressed scale are defined as “extreme and frequent interference
the role of nursing instructions in promotion of patients’ with normal social activities due to physical and emo-
awareness, as significant improvement was observed in tional problems.” According to McHorney, Ware, and
patients’ knowledge level after the nursing intervention Raczek (1993) interpretation of SF is complex as the
(p < .001). In a study by Chen et al. (2006) applying sys- scale is by design sensitive to the burden of both physical
tematic nursing instructions in pediatric emergency and mental health. Therefore, the observed differences
patients improved family satisfaction, compliance with cannot be confidently attributed to either physical or
nursing instructions and reduced unplanned return visits. mental health problems alone. Decreased social function-
These findings are in accordance with the findings of this ing in SLE has been linked to many factors including the
study. disease-related factors like pain and fatigue (Petri et al.,
Drenkard et al. (2012) in their study unraveled the 2013), medical treatments (Kulczycka, Sysa-Jedrzejowska,
advantages of a self-management program in the low & Robak, 2010a) obesity (Mina et al., 2015), and psy-
income African American women with SLE and showed chosocial problems (Duvdevany, Cohen, Minsker-Valtzer,
that applying Chronic Disease Self-management Program & Lorber, 2011). Improvement in pain and fatigue in
leads to improvement in physical health status according SLE has been shown to be associated with improvement
to SF-36 instrument scores. in the overall health scores as well as social functioning
Among SF-36 studied scales in our study, MH scores and bodily pain scores (Petri et al., 2013). Moreover, a
showed significant improvement in SLE patients after psychoeducational intervention focusing on enhancing
applying CCM (MH = 90.1  21.4) far beyond the scores self-efficacy, couples communication about lupus, social
of the general population (MH = 67.0  18.0). MH is a support, and problem solving (Karlson et al., 2004) has
result of a complex interaction between people’s personal been shown to be linked to improvement in global men-
behaviors and the social, economic, political, and physical tal health status, defined as the average score of SF, RE,
environment in which they live. The four major mental and MH subscales of SF-36 questionnaire. On the other
health dimensions of anxiety, depression, loss of behav- hand, in two RCTs with rigorous design and analysis
ioral or emotional control, and psychological well-being brief supportive-expressive group psychotherapy (Dobkin
are addressed in MH scale (Ware & Sherbourne, 1992). et al., 2002) and a cognitive-behavioral intervention in
Many factors can have impact on mental health. It has female adolescents with SLE (Brown et al., 2012) were
been shown that social networks and social ties have a shown to have no effect on QoL of the patients. Among
beneficial effect on mental health outcomes including the important influential factors on social functioning in
stress reactions, psychological well-being, and symptoms SLE, it has been shown that the therapeutic schedules
of psychological distress (Kawachi & Berkman, 2001). In a have the highest influence on patients’ social functioning
large study by Sohlman (2004), social support and social (Kulczycka et al., 2010a). Although treatment-related fac-
support networks are shown to strengthen mental health. tors like providing information about major drug classes
The positive correlation of social support with different used in SLE and the importance of adherence to treat-
domains of quality of life in SLE patients has also been ment plans are addressed in CCM, other factors like the
shown previously (Bae, Hashimoto, Karlson, Liang, & Dal- number of medications, the type of medications, and
troy, 2001; Da Costa et al., 1999; Mazzoni & Cicognani, their dosing are not directly addressed by CCM. These
2011; Zheng et al., 2009). Implementing CCM helps in important factors are mainly determined by independent
providing a supportive environment (hospital and nurs- disease-related indications. Finally, the short time frame
ing) for the patients and in developing the personal sup- in our study and the small number of studied partici-
port networks via family and nurse interactions with pants can also be addressed as other possible causes for
patients. Constitution of these interconnected and recipro- these two unaltered items.
cal relationships with patients by CCM may have played a Our study also had a number of shortcomings which
role in mental health improvement. may have affected the results. The patients showed differ-
In this study, SF and BP scales showed no improve- ing levels of literacy, cooperation, and interest which are
ment after applying CCM. SF items specifically ask about influential on the outcome. The participants were from

© 2016 Association of Rehabilitation Nurses


8 Rehabilitation Nursing 2016, 0, 1–11
M. Sahebalzamani et al. Continuous Care Model in SLE

to improved quality of life in SLE patients. Further eluci-


Key Practice Points dating studies should clarify CCM’s role in SLE care.
 Systemic lupus erythematosus (SLE) is a chronic autoim-
mune disease that has significant impact on the health-
related quality of life (HRQoL) of the patients. References

 Despite significant improvements in the survival of SLE Ahmadi, F. (2001). Introduction and evaluation of continuous
patients during the past decades, HRQoL of the patients care model for patients with chronic coronary artery disease.
is still very much affected by SLE. Tehran, Iran: Tarbiat Modares University.
Akbarian, M., Faezi, S.T., Gharibdoost, F., Shahram, F., Nadji,
 Applying continuous care model (CCM) in this study
A., Jamshidi, A.R., . . . Davatchi, F. (2010). Systemic lupus
significantly improved patients’ knowledge and family
awareness about the disease.
erythematosus in Iran: A study of 2280 patients over
33 years. International Journal of Rheumatic Diseases, 13(4),
 Moreover, CCM was shown to improve HRQoL in SLE 374–379.
patients. Arvidsson, S., Arvidsson, B., Fridlund, B., & Bergman, S.
(2011). Factors promoting health-related quality of life in
various cultural, social, and familial backgrounds. These people with rheumatic diseases: A 12 month longitudinal
parameters may induce a confounding effect on the study. BioMed Central Musculoskeletal Disorders, 12, 102.
results. All our studied SLE patients were ascribed to the Bae, S.C., Hashimoto, H., Karlson, E.W., Liang, M.H., &
same care program. The optimum study design to address Daltroy, L.H. (2001). Variable effects of social support by
our goal was a case–control model which could illustrate race, economic status, and disease activity in systemic lupus
the difference between CCM and non-CCM subset. Fur- erythematosus. Journal of Rheumatology, 28(6), 1245–1251.
Berkman, N.D., Sheridan, S.L., Donahue, K.E., Halpern, D.J.,
thermore, this analysis was based on self-designed nonval-
Viera, A., Crotty, K., . . . Viswanathan, M. (2011). Health
idated knowledge questionnaires. Future studies are
literacy interventions and outcomes: An updated
warranted to further validate these questionnaires.
systematic review. Evidence Report/Technology Assessment,
Continuous care model features a number of advan-
(199), 1–941.
tages. First, it is a continuous method tailored according
Brown, R.T., Shaftman, S.R., Tilley, B.C., Anthony, K.K., Kral,
to the needs of SLE patients. Moreover, this model moni-
M.C., Maxson, B., . . . Nietert, P.J. (2012). The health
tors numerous dimensions of the disease including physi-
education for lupus study: A randomized controlled
cal activity, diet, medical treatments, and sequelae of the cognitive-behavioral intervention targeting psychosocial
disease. In the current CCM model, family is exclusively adjustment and quality of life in adolescent females with
addressed and educated to achieve better surrounding for systemic lupus erythematosus. American Journal of the
patients. Finally, weekly consulting sessions and regular Medical Sciences, 344(4), 274–282.
follow-ups help healthcare providers to continuously Bullinger, M., Alonso, J., Apolone, G., Leplege, A., Sullivan,
monitor patients’ status. M., Wood-Dauphinee, S., . . . Ware, J.E., Jr (1998).
Taken together, our study demonstrated that the use Translating health status questionnaires and evaluating their
of CCM in SLE patients improved their knowledge and quality: The IQOLA Project approach. International Quality
promoted HRQoL in six scales, including Physical Func- of Life Assessment. Journal of Clinical Epidemiology, 51(11),
tioning, Physical Role Functioning, General Health, Vital- 913–923.
ity, Emotional Role Functioning, and Mental Health. The Chen, Y.C., Chien, S.F., Hsieh, Y.S., Sang, Y.Y., Tseng, Y.M., &
improved knowledge of the disease course, its sequelae, Chen, H.L. (2006). Family satisfaction with systematic
and deteriorating and ameliorating factors may have nursing instructions in a pediatric emergency department.
played a role. Furthermore, this model yielded better Hu Li Za Zhi, 53(5), 35–43.
understanding in families according to patients’ percep- Da Costa, D., Clarke, A.E., Dobkin, P.L., Senecal, J.L., Fortin,
tion. P.R., Danoff, D.S., & Esdaile, J.M. (1999). The relationship
between health status, social support and satisfaction with
medical care among patients with systemic lupus
erythematosus. International Journal for Quality in Health
Conclusion
Care, 11(3), 201–207.
The continuous care model is a feasible, comprehensive, Davatchi, F., Jamshidi, A.R., Banihashemi, A.T., Gholami, J.,
cost-effective, and noninvasive intervention which leads Forouzanfar, M.H., Akhlaghi, M., . . . Gharibdoost, F.

© 2016 Association of Rehabilitation Nurses


Rehabilitation Nursing 2016, 0, 1–11 9
Continuous Care Model in SLE M. Sahebalzamani et al.

(2008). WHO-ILAR COPCORD Study (Stage 1, Urban healthcare in multiple sclerosis. Expert Review of
Study) in Iran. Journal of Rheumatology, 35(7), 1384. Neurotherapeutics, 12(3), 343–352.
Davatchi, F., Tehrani Banihashemi, A., Gholami, J., Faezi, S.T., Longo, D., Fauci, A., Kasper, D., Hauser, S., Jameson, J., &
Forouzanfar, M.H., Salesi, M., . . . Rasker, J.J. (2009). The Loscalzo, J. (2011). Harrison’s principles of internal medicine.
prevalence of musculoskeletal complaints in a rural area in New York: McGraw Hill Professional.
Iran: A WHO-ILAR COPCORD study (stage 1, rural study) Mak, A., Isenberg, D.A., & Lau, C.S. (2013). Global trends,
in Iran. Clinical Rheumatology, 28(11), 1267–1274. potential mechanisms and early detection of organ
D’Cruz, D.P., Khamashta, M.A., & Hughes, G.R. (2007). damage in SLE. Nature Reviews Rheumatology, 9(5), 301–
Systemic lupus erythematosus. Lancet, 369(9561), 587–596. 310.
Dobkin, P.L., Da Costa, D., Joseph, L., Fortin, P.R., Edworthy, Mazzoni, D., & Cicognani, E. (2011). Social support and
S., Barr, S., . . . Clarke, A.E. (2002). Counterbalancing patient health in patients with systemic lupus erythematosus: A
demands with evidence: Results from a pan-Canadian literature review. Lupus, 20(11), 1117–1125.
randomized clinical trial of brief supportive-expressive group McHorney, C.A., Ware, J.E., Jr, & Raczek, A.E. (1993). The
psychotherapy for women with systemic lupus erythematosus. MOS 36-Item Short-Form Health Survey (SF-36): II.
Annals of Behavioral Medicine, 24(2), 88–99. Psychometric and clinical tests of validity in measuring
Drenkard, C., Dunlop-Thomas, C., Easley, K., Bao, G., Brady, physical and mental health constructs. Medical Care, 31(3),
T., & Lim, S.S. (2012). Benefits of a self-management 247–263.
program in low-income African-American women with Mina, R., Klein-Gitelman, M.S., Nelson, S., Eberhard, B.A.,
systemic lupus erythematosus: Results of a pilot test. Lupus, Higgins, G., Singer, N.G., . . . Brunner, H.I. (2015).
21(14), 1586–1593. Effects of obesity on health-related quality of life in
Duvdevany, I., Cohen, M., Minsker-Valtzer, A., & Lorber, M. juvenile-onset systemic lupus erythematosus. Lupus, 24(2),
(2011). Psychological correlates of adherence to self-care, 191–197.
disease activity and functioning in persons with systemic Molazem, Z., Rezaei, S., Mohebbi, Z., Ostovan, M.A., &
lupus erythematosus. Lupus, 20(1), 14–22. Keshavarzi, S. (2013). Effect of continuous care model on
Hochberg, M.C. (1997). Updating the American College of lifestyle of patients with myocardial infarction. Advanced
Rheumatology revised criteria for the classification of Research Yields in Atherosclerosis, 9(3), 186–191.
systemic lupus erythematosus. Arthritis and Rheumatism, Montazeri, A., Goshtasebi, A., Vahdaninia, M., & Gandek, B.
40(9), 1725. (2005). The Short Form Health Survey (SF-36): Translation
Jolly, M. (2005). How does quality of life of patients with and validation study of the Iranian version. Quality of Life
systemic lupus erythematosus compare with that of other Research, 14(3), 875–882.
common chronic illnesses? Journal of Rheumatology, 32(9), Navarrete-Navarrete, N., Peralta-Ramirez, M.I., Sabio, J.M.,
1706–1708. Martinez-Egea, I., Santos-Ruiz, A., & Jimenez-Alonso, J.
Karlson, E.W., Liang, M.H., Eaton, H., Huang, J., Fitzgerald, (2010). Quality-of-life predictor factors in patients with SLE
L., Rogers, M.P., & Daltroy, L.H. (2004). A randomized and their modification after cognitive behavioural therapy.
clinical trial of a psychoeducational intervention to improve Lupus, 19(14), 1632–1639.
outcomes in systemic lupus erythematosus. Arthritis and O’Neill, S., & Cervera, R. (2010). Systemic lupus
Rheumatism, 50(6), 1832–1841. erythematosus. Best Practice and Research. Clinical
Kawachi, I., & Berkman, L.F. (2001). Social ties and mental Rheumatology, 24(6), 841–855.
health. Journal of Urban Health, 78(3), 458–467. Pai, Y.C. (2010). The need for nursing instruction in patients
Kulczycka, L., Sysa-Jedrzejowska, A., & Robak, E. (2010a). The receiving steroid pulse therapy for the treatment of
influence of treatment on quality of life in systemic lupus autoimmune diseases and the effect of instruction on
erythematosus patients. Journal of the European Academy of patient knowledge. BioMed Central Musculoskeletal
Dermatology and Venereology, 24(1), 38–42. Disorders, 11, 217.
Kulczycka, L., Sysa-Jedrzejowska, A., & Robak, E. (2010b). Petri, M., Kawata, A.K., Fernandes, A.W., Gajria, K., Greth,
Quality of life and satisfaction with life in SLE patients—the W., Hareendran, A., & Ethgen, D. (2013). Impaired health
importance of clinical manifestations. Clinical Rheumatology, status and the effect of pain and fatigue on functioning in
29(9), 991–997. clinical trial patients with systemic lupus erythematosus.
Lau, C.S., & Mak, A. (2009). The socioeconomic burden of Journal of Rheumatology, 40(11), 1865–1874.
SLE. Nature Reviews Rheumatology, 5(7), 400–404. Piatt, G.A., Orchard, T.J., Emerson, S., Simmons, D., Songer,
Lejbkowicz, I., Caspi, O., & Miller, A. (2012). Participatory T.J., Brooks, M.M., . . . Zgibor, J.C. (2006). Translating the
medicine and patient empowerment towards personalized chronic care model into the community: Results from a

© 2016 Association of Rehabilitation Nurses


10 Rehabilitation Nursing 2016, 0, 1–11
M. Sahebalzamani et al. Continuous Care Model in SLE

randomized controlled trial of a multifaceted diabetes care Sohlman, B. (2004). Funktionaalisen mielenterveyden malli
intervention. Diabetes Care, 29(4), 811–817. positiivisen mielenterveyden kuvaajana (English summary: A
Pons-Estel, G.J., Alarcon, G.S., Scofield, L., Reinlib, L., & functional model of mental health as the describer of
Cooper, G.S. (2010). Understanding the epidemiology and positive mental health). National Research and Development
progression of systemic lupus erythematosus. Seminars in Centre for Welfare and Health (STAKES) Research Reports
Arthritis and Rheumatism, 39(4), 257–268. 137.
Rahim, A., Alhani, F., Ahmadi, F., Gholyaf, M., & Akhoond, Tan, E.M., Cohen, A.S., Fries, J.F., Masi, A.T., McShane, D.J.,
M.R. (2009). Effects of a continuous care model on Rothfield, N.F., . . . Winchester, R.J. (1982). The 1982
perceived quality of life of spouses of haemodialysis revised criteria for the classification of systemic lupus
patients. Eastern Mediterranean Health Journal, 15(4), 944– erythematosus. Arthritis and Rheumatism, 25(11), 1271–
950. 1277.
Rhee, R.L., Von Feldt, J.M., Schumacher, H.R., & Merkel, P.A. Thumboo, J., & Strand, V. (2007). Health-related quality of
(2013). Readability and suitability assessment of patient life in patients with systemic lupus erythematosus: An
education materials in rheumatic diseases. Arthritis Care and update. Annals of the Academy of Medicine, Singapore, 36(2),
Research, 65(10), 1702–1706. 115–122.
Sahebalzamani, M., Zamiri, M., & Rashvand, F. (2012). The Walker, C., Hernan, A., Reddy, P., & Dunbar, J.A. (2012).
effects of self-care training on quality of life in patients with Sustaining modified behaviours learnt in a diabetes
multiple sclerosis. Iranian Journal of Nursing and Midwifery prevention program in regional Australia: The role of social
Research, 17(1), 7–11. context. BioMed Central Health Services Research, 12, 460.
Salaffi, F., Carotti, M., Gasparini, S., Intorcia, M., & Grassi, Ware, J.E., Jr. (2000). SF-36 health survey update. Spine (Phila
W. (2009). The health-related quality of life in rheumatoid Pa 1976), 25(24), 3130–3139.
arthritis, ankylosing spondylitis, and psoriatic arthritis: A Ware, J.E., Jr., & Sherbourne, C.D. (1992). The MOS 36-item
comparison with a selected sample of healthy people. Health short-form health survey (SF-36): I. Conceptual framework
and Quality of Life Outcomes, 7, 25. and item selection. Medical care, 47, 3–483.
Salaffi, F., Sarzi-Puttini, P., Girolimetti, R., Atzeni, F., Williams, M.V., Baker, D.W., Parker, R.M., & Nurss, J.R.
Gasparini, S., & Grassi, W. (2009). Health-related quality of (1998). Relationship of functional health literacy to patients’
life in fibromyalgia patients: A comparison with rheumatoid knowledge of their chronic disease. A study of patients with
arthritis patients and the general population using the SF-36 hypertension and diabetes. Archives of Internal Medicine, 158
health survey. Clinical and Experimental Rheumatology, 27(5 (2), 166–172.
Suppl. 56), S67–S74. Yazdany, J., & Yelin, E. (2010). Health-related quality of life
Schmeding, A., & Schneider, M. (2013). Fatigue, health-related and employment among persons with systemic lupus
quality of life and other patient-reported outcomes in erythematosus. Rheumatic Diseases Clinics of North America,
systemic lupus erythematosus. Best Practice and Research. 36(1), 15–32, vii. doi: 10.1016/j.rdc.2009.12.006
Clinical Rheumatology, 27(3), 363–375. Zheng, Y., Ye, D.Q., Pan, H.F., Li, W.X., Li, L.H., Li, J., . . .
Smith, P.P., & Gordon, C. (2010). Systemic lupus Xu, J.H. (2009). Influence of social support on health-
erythematosus: Clinical presentations. Autoimmunity related quality of life in patients with systemic lupus
Reviews, 10(1), 43–45. erythematosus. Clinical Rheumatology, 28(3), 265–269.

© 2016 Association of Rehabilitation Nurses


Rehabilitation Nursing 2016, 0, 1–11 11

You might also like