A pilot evaluation of Arthritis Self-Management Program by lay leaders in patients with chronic inflammatory arthritis in Hong Kong

The objectives of this paper are to evaluate the efficacy of a community-based lay-led Arthritis Self-Management Program (ASMP) among patients with chronic inflammatory arthritis and evaluate the effectiveness of "shared care collaboration"
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  ORIGINAL ARTICLE A pilot evaluation of Arthritis Self-Management Program by layleaders in patients with chronic inflammatory arthritisin Hong Kong Ying-Ying Leung  &  Jackie Kwan  &  Patsy Chan  & Peter K. K. Poon  &  Christine Leung  &  Lai-Shan Tam  & Edmund K. Li  &  Anna Kwok  Received: 23 February 2014 /Revised: 4 September 2014 /Accepted: 28 September 2014 # International League of Associations for Rheumatology (ILAR) 2014 Abstract  The objectives of this paper are to evaluate theefficacy of a community-based lay-led Arthritis Self-Management Program (ASMP) among patients with chronicinflammatory arthritis and evaluate the effectiveness of  “ shared care collaboration ”  between hospital and community.We trained 17 lay leaders and recruited patients with chronicinflammatory arthritis via a new shared-care model betweenhospital rheumatology centers and community organizations.Participants were allocated to interventional group or a wait list control group. Evaluations were completed before, after (6 weeks), and 3 months after ASMP. We performed analysisof covariance with adjustment with age, sex, marital status,education, employment, duration of illness, and disability at  baseline. A total of 65 participants and 32 controls completedthe study. The mean (SD) age and duration of illness were52.0 (11.4) and 5.6 (7.3)years, 90.7 % were female, 80.4 %hadrheumatoidarthritis;25.8, 53.6, and 12.4% referrals werefrom hospitals, community organizations, and patient self-help groups, respectively. The interventional group had sig-nificantlylesspain(  p =0.049at6weeks),usedmorecognitivecoping methods (  p =0.008 at 6 weeks,  p =0.041 at 3 months)and practiced more aerobic exercise (  p =0.049 at 6 weeks,  p =0.008 at 3 months) after adjustment of covariance. The inter-ventional group had a trend of improvement in self-efficacy,fatigue, self-rated health, and health distress. A community- based lay-led ASMP showed positive beneficial effects on participants with chronic inflammatory arthritis. Shared-carecollaboration between hospitals, community organizations,and patient self-help groups was demonstrated. Keywords  Chronicinflammatoryarthritis .Self-management  .Layleaders .Shared-caremodel Introduction The healthcare system has been shifting towards a partnershipmodel of care [1]. Self-management education programs that are designed to encourage patients to take an active part inmanaging their own condition have been shown to have positive effects on patients ’  behaviors and health status inthe last two decades [2, 3]. Lay-led self-management educa- tionprogramstook a further step forward toempower patientswith chronic conditions to educate the  “  peer  ”  patients [4].There have been a number of national lay-led chronic disease programsinCaucasiancountries,demonstratingthefeasibilityof delivery of cost-effective care to the expanding populationswith chronic illness [5  –  7]. However, these programs have been delivered to mainly Caucasians [8, 9]. Data on effective- ness of these lay-led programs outside the United States(USA)andUnitedKingdom(UK) isspare.Onlya fewstudieswere adopted for use in different language or ethnic groups[10  –  12]. Effectiveness may be influenced by differences insocial, cultural, and local health service context that limitsgeneralizing published results. We, therefore, aim to evaluatethe effectiveness of a community-based arthritis self-management program (ASMP) led by trained lay leaders inChinese patients with chronic inflammatory arthritis in HongKong. We also evaluate the feasibility of the establishment of  Y. < Y. Leung ( * ) :  L. < S. Tam : E. K. LiDepartment of Medicine and Therapeutics, The Chinese Universityof Hong Kong, Sha Tin, Hong Konge-mail: katyccc@hotmail.comJ. Kwan : P. Chan : P. K. K. Poon :  C. Leung :  A. Kwok Community Rehabilitation Network, The Hong Kong Society for Rehabilitation, Kowloon, Hong KongY. < Y. LeungDepartment of Rheumatology & Immunology, Singapore GeneralHospital, Singapore, SingaporeClin RheumatolDOI 10.1007/s10067-014-2791-z  a shared-care model to facilitate the transit of care fromhospital to community. Methods Participants and recruitment Patients older than 18 years old with chronic inflammatoryarthritis including ankylosing spondylitis, rheumatoid arthri-tis,andpsoriatic arthritiswereincluded.Ashared-carereferralnetwork was established between a community organiza-tion  —  the Community Rehabilitation Networks (CRN) under the Hong Kong Society of Rehabilitation (HKSR); and thereferral state holders, including rheumatology divisions in all public hospitals, private rheumatologists, and the four regis-tered patient self-help groups for chronic inflammatory arthri-tis (Hong Kong Ankylosing Spondylitis Association, B27Association, Hong Kong Psoriatic Arthritis Association, andHong Kong Rheumatoid Arthritis Association). An  “ EasyReferral Program ”  was established between the CRN andthe Hong Kong Society of Rheumatology to recruit patientswith chronic inflammatory arthritis to CRN via a simplemechanism.This program enables a simplereferralofpatientsdirectly from managing physician and allied health profes-sionals and enables CRN to contact patients directly with patients ’  consent. The Hong Kong Society of Rheumatology,the sole professional society for practicing rheumatologists inHong Kong, holds monthly professional training for rheumatologists-in-training and practicing rheumatologists(both in the private and public sectors). The information of the  “ Easy Referral Program ”  was introduced to all rheumatol-ogists and rheumatology nurses, reminders were sent via monthly emails and the information for referral was madeavailable in the Hong Kong Society of Rheumatologywebsite. Diagnoses of chronic inflammatory arthritis of pa-tients were given by the referring rheumatologist and partici- pants referred from sources had diagnoses confirmation withthe attending physicians. The initial assessments of eligibilityfor participation were performed by licensed and experiencedASMP professional leaders. We excluded subjects with com- promised mentation, unable to understand the informed con-sent,orunableto administerthe outcome measuresevaluationquestionnaires. We further excluded subjects with self-reported cancer who had received chemotherapy or radiationwithin the past 3 months, subjects with stroke in the past 3 months, subjects with major joint or other surgeries in the past 3 months, subjects with severe physical disability, bed- bound, wheelchair-bound, or experienced loss of balancewhile standing, and subjects who participated in another trialor study during the past 30 days. Participants who may not have ready accessibility to ASMP classes due to time alloca-tion or various reasons were invited to participate as wait list control. The study protocol was read and approved by theJoint Chinese University of Hong Kong  —   New TerritoriesEast Cluster Clinical Research Ethics Committee. Subjectswhomettheinclusioncriteriaweregivendetailedinformationabout study procedures and signed informed written consent.The lay-led arthritis self-management programThe ASMP, developed by Lsrc and Fries [13] at StanfordUniversity,isbasedonBandura  ’ s[14]concept ofself-efficacyand behaviorchange. The HKSR has beena licensed provider of ASMPs since 2000, and have been conducting ASMP asled by trained nurses or allied health professionals accordingto structure protocol in the six community centers under theCRN. In 2010, the CRN initiated the  “ Train the Trainers program ”  totrain lay leaders with similar inflammatory arthri-tis problems to lead the ASMP. These lay leaders were trainedin small group leadership and taught on basic principles of self-management and knowledge of chronic inflammatoryarthritis by a designated rheumatologist. A total of 17 layleaders were successfully trained and licensed to providelay-led ASMP classes. The lay-led ASMP classes consistedof six 2-hour classes (each with 10  –  15 participants) held oncea week, led by one professional leader and one lay leader.Evening and weekend classes could be conducted ad hoc asrequired to increase accessibility. The topics covered were (1)an overview of self-management principles; (2) medical as- pects and pain management; (3) joint protection; (4) physicalactivity and exercise; (5) available treatments; (6) managingstress; (7) nutrition; and (8) communication skills and theavailability of community resources. The classes were con-ducted according to a structured protocol. A modified ASMP protocol with added exercise component was used for allclasses. This modified ASMP protocol stemmed from pa-tients ’  expressed desire to learn more about exercise in anearlier study [15] and had a proven acceptance to participants,feasibility, and efficacy in professional-led ASMP in partici- pants with osteoarthritis (OA) [16]. We taught three types of exercises in this protocol, including stretching, walking, andthe eight Tai Chi movements ( “ eight basic movements ”  de-veloped by Professor Cheung, Beijing Sports University and produced by the Li Fai Centre of Wushu in August 2001) that aimed at enhancing exercise on the affected joints. The par-ticipants and trainers practiced the eight Tai Chi movementstogether in each class. The participants were asked to set their goal on exercise practice and received positive feedback bythe trainers every week.Outcome measuresBoth groups were assessed at baseline, and upon finishing the program at week 6 and 3 months after finishing the program.For the interventional group, participants were required to Clin Rheumatol  attend at least three out of the five initial classes and the finalsixth class to be included in the analysis. Demographic infor-mation (e.g., age, gender, education, employment status, re-ferral source) and arthritis-related information (e.g., type of arthritis, duration of disease, and follow-up hospital/clinic)were collected at baseline only. Outcomes were measuredwith a self-administered Chinese version of the questionnaireon chronic disease self-management study measures devel-oped by Lsrc et al. In this study, we included three primaryclassifications of outcome variables (health status, health behaviors, and self-efficacy) [17], which enable a descriptionof how well people are managing their chronic arthritis.Health statusSelf-ratedhealthwasmeasuredonafive-levelresponsewith1 being excellent to 5 being poor. Arthritis pain and fatigueintensities were measured on 11-point numeric rating scales,withzerobeingnoneand10beingmostseverepainorfatigue.The ability to perform a range of daily activities such asdressing and grooming, walking, hygiene, arising, eating,and reaching was measured by the modified Health Assess-ment Questionnaire (HAQ) [18]. Scores ranged from 0 and 3,withhigherscores indicating greater disability. Healthdistresswas measured by the frequency of having distress in the past 2 weeks on a six-level response (from 0 none of the time to 5all of the time). Role or social limitation was measured by a four-item scale by asking participants on how severe their health is interfering with various activities over the past 4 weeks (from 0 not at all to 4 almost totally).Health behavior Cognitive symptom management was measured on by askingthe frequency (0 never to 5 always) of using self-management skill in handling their unpleasant feelings. The frequency andduration of leisure-time exercise (including stretching or strengthening exercise, walking exercise, swimming or water exercise, cycling, exercise in the gymnasium, and other aero- bic exercises) were recorded on weekly basis. Tai Chi wasscored as  “ stretching or strengthening ”  exercise.Self-efficacySelf-efficacy was measured by the short 8-item Arthritis Self-Efficacy Scale (ASES-8) [19], which was built on an earlier 20-itemASES[20].ItincludedtwoitemsfromtheASESpainsubscale,fouritemsfromtheothersymptomssubscale(whichasks confidence in managing mood, frustration, pain duringactivities, and to regulate daily activity), and two new itemsrelated to preventing pain and fatigue from interfering life.The ASES-8 has been used in various self-management pro-grams [12, 21, 22], and the reported Cronbach ’ s alpha is 0.94.Health-related quality of life assessment Health-related quality of life (HRQoL) was assessed by theChinese(HongKong)versionoftheMedicalOutcomesStudyShort Form health survey [23], which is a validated andreliable instrument for HRQoL measurement in the local population. The norm-based Physical Component Summaryscores (SF36-PCS) and Mental Component Summary Scores(SF36-MCS) were then formulated [24].Statistical analysisBaseline characteristics of participants from the control andintervention groups were compared using descriptive para-metric or nonparametric statistics as appropriate. Analysis of covariance (ANCOVA) was used to compare changes in theoutcome variables at 6 weeks and 3 months between thetreatment and control groups. The analyses were controlledfor the baseline variables including age, sex, duration of illness, and baseline disability (HAQ). Hypothesis tests per-formed were two-sided and  p <0.05 was considered statisti-cally significant. All statistical analyses were performed usingIBM SPSS Statistical Package version 21. Results A total of 99 participants were referred. There were two partic-ipants who did not attend three out of five initial classes andwere not included in the final analysis. Sixty-five participantscompletedthe6-weeklay-ledASMPandcompletedevaluationassessments,while32wereinwaitlistcontrol.At3months,58and 32 participants from the interventional and control groupscompleted evaluation assessments. Majority of participantswere female (90.7 %) with rheumatoid arthritis (RA)(80.4 %). There was no significant difference in baseline char-acteristics between participants in the interventional groupcompared to control (Table 1). At the end of lay-led ASMP(6weeks),participants inthe interventiongrouphadsignificant improvements in pain level, cognitive management, and exer-cise behavior compared with control. At 3 months, participantsin the interventional group had significant improvement in pain, physical function, health distress, cognitive management,and exercise behavior compared to control (Table 2). For theANCOVA model, the assumption of homogeneity was foundto be tenable. For each independent variable, the null hypoth-esis of equal variances is rejected with the Levene ’ s test. Thehomogeneity of regression was confirmed by nonsignificant   p  values for all individual variables and the interaction termswith treatment groups. After adjustment with various con-founding factors, pain, cognitive management, and exercise behavior remained significantly different comparing the Clin Rheumatol  interventional to control group at 6 weeks; while HAQ, healthdistress, and exercise behavior were significantly different at 3 months. The trend of improvement in self-efficacy wasobserved, but not reaching statistical significance in bothnonadjusted and adjusted models (Tables 2 and 3). Discussion This pilot study demonstrated the feasibility and efficacy of a community-based ASMP led by trained lay leaders for chron-ic inflammatory arthritis in Hong Kong. There was significant improvement in pain symptom, cognitive management, andexercise behavior among participants in the interventionalgroup compared with control in 6 weeks and 3 months. Therewas a trend of improvement in self-efficacy, but it was not significant. This is consistent with studies on lay-led ASMPsin Caucasian countries. The short-term efficacy of ASMP issimilar to previous regional ASMPs led by professionals inRA and OA [16, 25]. Modern health care systems are shifting from hospital careto shared-care between communities, and emphasizing onempowering patients to play active roles in managing their own chronic conditions [1, 26]. A lay-led self-management  education program is one of the effective ways of promotingthisshift ofshared-care model,witheffectiveness demonstrat-ed [5  –  7, 27]. However, these programshavebeendelivered to Caucasians, who are predominantly English-speaking, edu-cated, well-resourced, and who relate strongly to the values of individualism, self-determination, and independence onwhich these programs are based [8, 9]. Data on effectiveness of these lay-led programs outside the USA and UK is spare.Only a few studies were adopted for use in different languageor ethnic groups [10  –  12]. Effectiveness may be influenced bydifferences in social, cultural, and local health service context that limits generalizing published results.The effectiveness of professional-led ASMP have beendemonstrated in a single-arm study in 70 patients with RAin Hong Kong [25], showing improvement in self-efficacy,cognitive management, psychological well-being, pain, andfatigue. Another controlled trial locally on ASMP with anadded exercise component in patients with OA have showna positive effect in reducing pain, fatigue, knee range of motion, exercise behavior, and improvement functional statusover 16 weeks [16]. The added exercise component is wellaccepted by local participants and highly feasible in our set-ting. Interestingly, Siu et al. compared a generic chronicdisease self-management program (CDSMP), which is basedon the same concept and frame work with ASMP, to a Tai Chiclass[28].ParticipantsoftheCDSMPhadsignificantlyhigher self-efficacy, usedmorecognitive copingstrategiestomanage pain and symptoms, and felt more energetic than the subjectsin the Tai Chi class comparison group. This implied that the positive effectof the improved self-efficacy and health behav-ior wasnot due tothe TaiChiexerciseclass alone.Inthis pilot study, we aim to extend the patient empowerment to train layleaders to lead ASMP. A total of 17 lay leaders with chronicinflammatory arthritis were trained, two thirds of whom has been actively leading groups. We established a shared-caremodel between hospital rheumatology care settings to Table1  Demographiccharacteristicsofparticipantsinlay-ledASMPfor chronic inflammatory arthritisControl( n =32)Interventional( n =65)  p Age 51.4±13.7 52.4±10.2 0.703% Female 87.5 92.3 0.443Marital status, %Single 21.9 20.0Married 62.5 69.2Separated/divorced/widowed 15.6 10.8 0.809Education, %Primary 31.3 21.5Secondary 56.3 67.7Tertiary or above 12.5 10.8 0.519Employment, %Unemployed 12.5 9.5Employed 37.5 28.6Housewife 31.3 39.7Retired 18.8 22.2 0.742Diagnosis, %Ankylosing spondylitis 6.3 6.2Psoriatic arthritis 15.6 12.3Rheumatoid arthritis 78.1 81.5 0.901Duration of illness, years 4.5±6.2 6.1±7.8 0.320Health statusSelf-rated health (1  –  5) 3.56±0.76 3.82±0.76 0.106Pain (0  –  10) 4.25±2.17 4.85±2.28 0.216Fatigue (0  –  10) 4.94±2.06 5.12±2.26 0.709HAQ (0  –  3) 0.78±0.62 0.81±0.55 0.990Health distress (0  –  6) 1.91±1.03 1.98±1.26 0.784Social limitation (0  –  4) 1.79±0.88 1.97±0.97 0.379Health behavior Cognitive symptommanagement (0  –  5)2.02±0.86 2.03±0.88 0.925Stretching exercise (0  –  180/min) 52.5±53.3 69.6±68.9 0.221Aerobic exercise (0  –  540/min) 139.2±110.3 129.9±82.6 0.647Self-efficacy (10-100) 62.6±18.4 65.9±18.7 0.415HRQoLSF36-PCS 28.0±13.6 28.4±11.4 0.878SF36-MCS 42.8±11.4 42.5±11.5 0.913  HAQ  Health Assessment Questionnaire disability,  HRQoL  health-relatedquality of life,  SF36  -  PCS   norm-based physical component summary of Medical Outcome Short Form 36,  SF36-MCS   norm-based mental com- ponent summary of Medical Outcome Short Form 36Clin Rheumatol  Table 2  Comparison of change in outcome variables between control and intervention groups at 6 weeks and 3 months from baseline6 weeks  p  3 months  p Control ( n =32) Interventional ( n =65) Control ( n =32) Interventional ( n =58)Health statusSelf-rated health (1  –  5) 0.00±0.62  − 0.17±0.58 0.181 0.00±0.57  − 0.24±0.51 0.048Pain (0  –  10) 0.23±0.96  − 0.69±0.86 0.027* 0.14±1.39  − 0.77±2.14 0.033*Fatigue (0  –  10)  − 0.07±1.46  − 0.34±2.11 0.537 0.05±1.63  − 0.27±2.10 0.464HAQ (0  –  3) 0.02±0.35  − 0.07±0.34 0.260 0.04±0.31  − 0.13±0.36 0.037*Health distress (0  –  6)  − 0.11±0.76  − 0.32±0.83 0.231  − 0.02±0.82  − 0.42±0.85 0.031*Social limitation (0  –  4)  − 0.08±0.87  − 0.30±0.65 0.162  − 0.05±0.73  − 0.34±0.64 0.060Health behavior Cognitive symptom management (0  –  5)  − 0.03±0.79 0.42±0.79 0.031* 0.11±0.74 0.41±0.93 0.129Stretching exercise (0  –  180/min) 21.0±58.4 28.8±67.6 0.531  − 1.9±47.4 30.3±68.4 0.021*Aerobic exercise (0  –  540/min) 6.00±120.6 58.9±118.3 0.049*  − 14.5±133.9 69.7±137.0 0.007*Self-efficacy (10-100) 2.18±11.78 4.30±17.09 0.549 0.86±10.94 6.39±14.23 0.061HRQoLSF36-PCS 1.15±9.02 2.49±7.42 0.617 0.24±7.74 3.06±7.18 0.112SF36-MCS 1.10±10.39 4.24±9.98 0.249 1.61±9.44 4.77±9.87 0.173Changes in outcome variables compared with baseline  HAQ  Health Assessment Questionnaire disability,  HRQoL  health-related quality of life,  SF36-PCS   norm-based physical component summary of Medical Outcome Short Form 36,  SF36-MCS   norm-based mental component summary of Medical Outcome Short Form 36*  p <0.05 Table 3  Adjusted differences in change of variable between interventional and control groups6 weeks 3 months  F   Meandifference a  SE 95 % CI  p F   Meandifference a  SE 95 % CI  p Health statusSelf-rated health (1  –  5) 2.43  − 0.19 0.12  − 1.17, 0.91 0.135 2.68  − 0.19 0.11  − 0.04, 0.04 0.106Pain (0  –  10) 3.80  − 0.82 0.42  − 1.66, 0.02 0.049* 3.59  − 0.84 0.44  − 1.71, 0.04 0.062Fatigue (0  –  10) 0.68  − 0.35 0.43  − 1.20, 0.50 0.411 0.99  − 0.44 0.45  − 1.33, 0.45 0.323HAQ (0  –  3) 1.28  − 0.08 0.07  − 0.23, 0.06 0.262 4.57  − 0.17 0.08  − 0.32, 0.01 0.036*Health distress (0  –  6) 1.57  − 0.23 0.18  − 0.59, 0.14 0.213 4.03  − 0.39 0.19  − 0.78, 0.04 0.048*Social limitation (0  –  4) 2.09  − 0.24 0.16  − 0.56, 0.09 0.151 2.47  − 0.24 0.15  − 0.54, 0.06 0.120Health behavior Cognitive symptom management (0  –  5) 6.95 0.47 0.18 0.11, 0.82 0.010* 3.63 0.36 0.19 0.02, 0.74 0.060Stretching exercise (0  –  180/min) 0.76 12.6 14.5  − 16.1, 41.3 0.386 6.13 36.0 14.5 7.06, 64.9 0.015*Aerobic exercise (0  –  540/min) 4.17 53.6 26.3 1.363, 106.0 0.044* 7.78 87.0 31.2 24.9, 149.1 0.007Self-efficacy (10-100) 0.48 2.34 3.38  − 4.38, 9.06 0.491 3.44 5.62 3.03  − 0.41, 11.6 0.067HRQoLSF36-PCS 0.02 0.28 1.94  − 3.59, 4.16 0.885 1.748 2.33 1.76  − 1.19, 5.85 0.191SF36-MCS 1.09 2.53 2.43  − 2.31, 7.36 0.301 1.04 2.35 2.39  − 2.34, 7.21 0.312All analysis adjusted for covariants: age, sex, duration of illness, and HAQ at baseline  HAQ  Health Assessment Questionnaire disability,  HRQoL  health-related quality of life,  SF36-PCS   norm-based physical component summary of Medical Outcome short form 36,  SF36-MCS   norm-based mental component summary of Medical Outcome short form 36*  p <0.05 a  Difference in the changes in outcome variables in interventional and control groups (interventional − control group)Clin Rheumatol
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