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Leisure Activities in Rheumatoid Arthritis. Associated Factors and Assessment

Wikström, Ingegerd LU (2006)
Abstract (Swedish)
Popular Abstract in Swedish

Fritidsaktiviteter bland personer med reumatoid artrit. Vad predikterar och hur mäter man?



Fritidsaktiviteter ansågs redan i antikens Grekland leda till inre tillfredsställelse, mening och värde i livet. De genomfördes enbart för sin egen skull och utan tanke på belöning. I början av 1900-talet kunde fritidsaktiviteter endast genomföras av de personer som inte behövde arbeta för sitt uppehälle. Det var inte förrän under mitten av 1900-talet som fritidsaktiviteter accepterades och inte ansågs som slöseri med tid. Fritidsaktiviteter kan minska isolering och leda till ett ökat självförtroende. Att tvingas lämna sin viktigaste fritidsaktivitet kan leda till depression.

... (More)
Popular Abstract in Swedish

Fritidsaktiviteter bland personer med reumatoid artrit. Vad predikterar och hur mäter man?



Fritidsaktiviteter ansågs redan i antikens Grekland leda till inre tillfredsställelse, mening och värde i livet. De genomfördes enbart för sin egen skull och utan tanke på belöning. I början av 1900-talet kunde fritidsaktiviteter endast genomföras av de personer som inte behövde arbeta för sitt uppehälle. Det var inte förrän under mitten av 1900-talet som fritidsaktiviteter accepterades och inte ansågs som slöseri med tid. Fritidsaktiviteter kan minska isolering och leda till ett ökat självförtroende. Att tvingas lämna sin viktigaste fritidsaktivitet kan leda till depression.



Personer som nyinsjuknat i reumatoid artrit (RA) får ofta svårt att genomföra fritidsaktiviteter, och förändrar dem ofta för att de ska blir lättare att delta i. Värdet av fritidsaktiviteten tycks också minska om den upplevs som svår att genomföra.



Det övergripande syftet med denna avhandling var att ta reda på hur personer med RA uppfattar och utför fritidsaktiviteter och att söka orsakerna till detta. Syftet var också att testa ett nytt fritidsindex, Patient-Specific Leisure Scale (PSLS), beträffande möjligheten att sanningsenligt (giltigt) och med precision (pålitligt) mäta fritidsaktiviteter för att kunna använda detta i uppföljning av patienter.



Den första studien är en studie av 80 patienter med RA som hade deltagit i ett treveckors rehabiliteringsprogram och som följts upp 2-5 år senare. Deras fritidsaktiviteter kartlades med hjälp av en strukturerad intervju. Vid uppföljningen användes också Norlings frågeformulär som består av en checklista med 18 fritidsområden.?Aktiva? och ?inte uppenbarligen aktiva eller passiva? fritidsaktiviteter enligt Norlings frågeformulär undersöktes. Detta ställdes mot svårigheter med ADL-aktiviteter, handfunktion, greppstyrka, livskvalitet, ångest, depression, coping-strategier, smärta, upplevelse av sjukdomen, blodprover som visade sjukdomsaktivitet och mediciner. Resultatet var att ?aktiva? fritidsaktiviteter hade ökat medan ?inte uppenbarligen aktiva eller passiva? var oförändrade. Förändringen i ?aktiva? fritidsaktiviteter var svagt associerade med handfunktion och ADL-aktiviteter vid studiens början. Förändringen orsakades inte av sociodemografiska eller undersökta sjukdomsvariabler vid studiens början. Det samma gällde även under uppföljningstiden. Depression samt coping-strategierna självbild, förnekelse av smärta och ökad aktivitet, samverkade svagt med fritidsaktiviteter. Ångest korrelerade inte med utförandet av fritidsaktiviteter. Ett av de områden inom livskvalité som påverkades mest var utöver hälsa aktiv rekreation.



Den andra studien var en kvalitativ studie av 18 strategiskt utvalda patienter som genomfördes med delvis strukturerade frågor. Anledningen till undersökningen var att ta reda på hur patienterna upplevde att fritidsaktiviteterna påverkades av sjukdomen. Tre beskrivningskategorier utformades. Den första benämndes att uppleva hinder, med de fyra undergrupperna: uppleva begränsningar, behöva tid, finna balans, samt att vara beroende. Den andra var att uppleva sammanhang med undergrupperna: acceptera känslor, delta i sociala sammanhang, vara aktiv, och att ha insikt. Den sista kallades att finna lösningar med undergrupperna: att välja, att planera, samt att acceptera. Patienterna med RA upplevde begränsningar i sina fritidsaktiviteter huvudsakligen på grund av tidsbrist och ett minskat antal fritidsaktiviteter att välja mellan.



Den tredje studien är en studie som omfattande 196 patienter med nydiagnostiserad RA varav 147 patienter följdes upp 7-67 månader senare. Etthundra fyrtiofyra patienter hade matchad kontroll från det svenska befolkningsregistret vid början av studien. I samban med studiens början samt efter 6, 12, 18, 24, 36, 60 månaders uppföljning undersöktes hos RA patienterna smärta, sjukdomsuppfattning, svullna och ömma leder, läkarens uppfattning om sjukdomens omfattning samt blodprover som mätte sjukdomsaktiviteten. I både patient- och kontrollgruppen undersöktes ADL-aktiviteter, utbildning, arbete och fritidsaktiviteter. Patienterna med tidig RA deltog i färre fritidsaktiviteter än kontrollgruppen. Denna skillnad fanns enbart bland patienter med låg utbildning. Ålder, utbildning, ADL-aktiviteter och hur många fritidsaktiviteter man var intresserad av vid studiens början påverkade dessutom förlusten av fritidsaktiviteter. Under uppföljningstiden förändrades inte antalet fritidsaktiviteter på gruppnivå, men individuella förändringar förekom, och patienter började och avslutade ett stort antal fritidsaktiviteter. Friluftsliv och motionsidrott ökade signifikant hos kvinnor. Den sammanlagda bördan av funktionsnedsättning under uppföljningstiden predikterade delvis denna förändring medan sjukdomens inflammationsgrad inte gjorde detta. Ett av området inom livskvalité som påverkades mest var utöver hälsa aktiv rekreation.



I den fjärde studien testades i tre undersökningar PSLS:s förmåga att sanningsenligt (giltigt) och med precision (pålitligt) mäta fritidsaktiviteter. Fyrtionio RA patienter deltog i en undersökning om hur stabilt instrumentet var v id två åberoende mätningar med 14 dagars intervall (pålitlighet). Etthundra patienter deltog i en undersökning för att se hur väl resultatet överensstämde med andra instrument som mäter variabler som påverkar fritidsaktiviteter (giltighet). Tjugofem patienter deltog i en undersökning avseende hur känsligt instrumentet var för att registrera förändringar (i samband med tre månaders behandling med TNF hämmare). PSLS tycks vara stabilt, pålitligt och känsligt för förändringar, när det gäller mätning av fritidsaktiviteter.



Jag fann i dessa fyra studier, att de mätinstrumenten som vanligtvis användes för att mäta sjukdomsaktivitet, inte predikterade förändringar av fritidsaktiviteter. Mätinstrument för funktionshinder predikterade endast i måttlig omfattning dessa förändringar. Man bör söka efter andra orsaker som mer speglar patientens personlighet och individuella förutsättningar. Viktiga aspekter för patienterna vid utövande av fritidsaktiviteter var upplevelse av sammanhang och att de försökte finna lösningar på sina problem. PSLS tycks vara stabilt, pålitligt och känsligt för att mäta fritidsaktiviteter bland patienter med RA. (Less)
Abstract
Leisure Activities in Rheumatoid Arthritis. Associated Factors and Assessment.



Leisure activities were considered to give intrinsic pleasure, meaning and value to life already in ancient Greek. It was also performed for its own sake and not by consideration of any external rewards. In the beginning of the 20th century leisure was only possible for wealthy people who could occupy themselves with non-productive consumption of time. It was not until the middle of the 20th century that leisure got more accepted and not seen as an undesirable activity. Participating in leisure activities may prevent from isolation, and give better self-confidence. To be forced to abandon the most important leisure activity may lead to... (More)
Leisure Activities in Rheumatoid Arthritis. Associated Factors and Assessment.



Leisure activities were considered to give intrinsic pleasure, meaning and value to life already in ancient Greek. It was also performed for its own sake and not by consideration of any external rewards. In the beginning of the 20th century leisure was only possible for wealthy people who could occupy themselves with non-productive consumption of time. It was not until the middle of the 20th century that leisure got more accepted and not seen as an undesirable activity. Participating in leisure activities may prevent from isolation, and give better self-confidence. To be forced to abandon the most important leisure activity may lead to depression.



In literature, patients with rheumatoid arthritis (RA) are described as having difficulties in performing leisure activities, and that they quite often change their leisure activities to those of a more sedentary nature, while trying to overcome the obstacles of the disease. Leisure activities quite often lose their value, as they are often diminished then experienced as being difficult to perform.



The overall purpose of this thesis was to investigate the perception of leisure activities in patients with RA and to search for associable factors and predictors. Another objective was to validate a new leisure index, namely the Patient-Specific Leisure Scale (PSLS).



The first study is a prospective study and includes 80 patients with RA who had participated in a three-week rehabilitation programme. The number of leisure activities was assessed through a structured interview. At follow-up Norling´s index was also used. This is an interest check list which lists 18 domains of leisure activities for which the patients can indicate performance and interest. ?Active? and ?not obviously active or passive? leisure activity according to Norling´s index were investigated together with Health Assessment Questionnaire (HAQ), Signals of Functional Impairment (SOFI), grip strength, Quality of Life Scales (QOLS), the Hospital Anxiety and Depression Scale (HADS), Coping Strategies Questionnaire (CSQ), global pain (visual-analogue scale (VAS)), global assessment of disease activity (VAS), C- reactive protein (CRP), erythrocyte sedimentation rate (ESR) and medication as possible predictors. It was found that ?active? leisure activity had increased, and ?not obviously active or passive? leisure activities were unchanged. The number of ?active? leisure activity was moderately associated with SOFI and HAQ at baseline. Activity were not predicted by socio-demographic variables or variables reflecting disease activity at baseline or during the follow-up period. Depression and the coping strategies self-statement, ignoring sensation and increasing activities were weakly but not significantly correlated to leisure activities. Anxiety did not correlate with performance of leisure activities. Active recreation was one of the most affected domains of QOLS.



The second study was a qualitative study using semi-structured interviews to explore the impact of RA on leisure pursuits in 18 strategically chosen patients with RA. Three descriptive categories were found, namely constraints containing four conceptions: experiencing limitations, needing time, finding a balance, and being dependent. Coherence containing four conceptions: accepting feelings, participating in a social context, being active, and having insight. Solutions containing three conceptions: choosing, planning, and adapting. Patients with RA experienced restrictions when performing leisure activities due to constraints and coherence but they tried to find solutions to their problems.



The third study is a prospective, controlled study of 196 newly diagnosed patients with RA. One hundred and forty-seven patients were followed longitudinally, and 144 had a matched control from the Swedish population census register at baseline. The following variables were measured at baseline, after 6,12,18,24,36, 60 months and follow-up in RA patients VAS-pain, VAS global assessment, ESR, CRP, rheumatoid factor (RF), swollen and tender joints out of 28, the medical practitioner's judgement of disease activity, and disease activity score (DAS28). The following measures were performed both in RA and control group, HAQ, education, occupation, and NPS-index. Patients with RA diagnosed at an early stage performed fewer leisure activities compared to controls, a difference observed only among persons with low level of education. Factors independently associated and partially correlated with the number of leisure activities domains performed at baseline were age, education, HAQ, and the number of domains interested in. No change on group level was seen during follow-up, but domains of leisure activities changed during follow up and activities performed in outdoor life and exercise in individual sports increased significantly in women. Patients both stopped and started a substantial number of leisure activities on an individual level. The severity of the disease did not at all predict these individual changes at all, although the accumulated burden of disability during follow up tended to. Active recreation beside health was one of the most affected domains of QOLS.



In the fourth study a new leisure index the PSLS were evaluated regarding reliability, validity and responsiveness. Forty-nine consecutive RA patients participated in test-retest, 100 RA-patients in construct validity and 25 RA-patients in responsiveness (after three months of TNF inhibitors). The PSLS appeared to be feasible, reliable, valid and responsive for measuring leisure activities.



I found in these four studies that commonly used variables for measuring disease activity did not predict change in leisure activities, and that disability only moderately predicts such change. Other predictors must be sought, perhaps more related to personality and individual resources. I also found that patients with RA experienced restrictions when performing leisure activities due to constraint and coherence but that they tried to find solutions to their problems. The PSLS seems reliable and valid for measuring leisure activities among patients with RA. Active recreation beside health was one of the most affected domains of QOLS. (Less)
Please use this url to cite or link to this publication:
author
supervisor
opponent
  • Professor Lundberg, Ingrid, Institutionen för Medicin, Karolinska Universitetssjukhuset, Solna
organization
publishing date
type
Thesis
publication status
published
subject
keywords
Leisure activities, assessments, validity, reumatologi, muskelsystem, Skelett, reliability, muscle system, rheumatoid arthritis, associated factors, predictors, quality of life, rheumatology locomotion, occupational therapy, Skeleton
pages
130 pages
publisher
Department of Rheumatology, Lund University
defense location
Aulan, Medicinska Kliniken Universitetssjukhuset MAS, Malmö
defense date
2006-11-23 09:00
ISSN
1652-8220
ISBN
91-85559-43-1
language
English
LU publication?
yes
id
3f24ebc6-7435-44d4-a238-6ece5decd8f2 (old id 547610)
date added to LUP
2007-09-20 11:38:23
date last changed
2018-11-21 20:37:17
@phdthesis{3f24ebc6-7435-44d4-a238-6ece5decd8f2,
  abstract     = {Leisure Activities in Rheumatoid Arthritis. Associated Factors and Assessment.<br/><br>
<br/><br>
Leisure activities were considered to give intrinsic pleasure, meaning and value to life already in ancient Greek. It was also performed for its own sake and not by consideration of any external rewards. In the beginning of the 20th century leisure was only possible for wealthy people who could occupy themselves with non-productive consumption of time. It was not until the middle of the 20th century that leisure got more accepted and not seen as an undesirable activity. Participating in leisure activities may prevent from isolation, and give better self-confidence. To be forced to abandon the most important leisure activity may lead to depression.<br/><br>
<br/><br>
In literature, patients with rheumatoid arthritis (RA) are described as having difficulties in performing leisure activities, and that they quite often change their leisure activities to those of a more sedentary nature, while trying to overcome the obstacles of the disease. Leisure activities quite often lose their value, as they are often diminished then experienced as being difficult to perform.<br/><br>
<br/><br>
The overall purpose of this thesis was to investigate the perception of leisure activities in patients with RA and to search for associable factors and predictors. Another objective was to validate a new leisure index, namely the Patient-Specific Leisure Scale (PSLS).<br/><br>
<br/><br>
The first study is a prospective study and includes 80 patients with RA who had participated in a three-week rehabilitation programme. The number of leisure activities was assessed through a structured interview. At follow-up Norling´s index was also used. This is an interest check list which lists 18 domains of leisure activities for which the patients can indicate performance and interest. ?Active? and ?not obviously active or passive? leisure activity according to Norling´s index were investigated together with Health Assessment Questionnaire (HAQ), Signals of Functional Impairment (SOFI), grip strength, Quality of Life Scales (QOLS), the Hospital Anxiety and Depression Scale (HADS), Coping Strategies Questionnaire (CSQ), global pain (visual-analogue scale (VAS)), global assessment of disease activity (VAS), C- reactive protein (CRP), erythrocyte sedimentation rate (ESR) and medication as possible predictors. It was found that ?active? leisure activity had increased, and ?not obviously active or passive? leisure activities were unchanged. The number of ?active? leisure activity was moderately associated with SOFI and HAQ at baseline. Activity were not predicted by socio-demographic variables or variables reflecting disease activity at baseline or during the follow-up period. Depression and the coping strategies self-statement, ignoring sensation and increasing activities were weakly but not significantly correlated to leisure activities. Anxiety did not correlate with performance of leisure activities. Active recreation was one of the most affected domains of QOLS.<br/><br>
<br/><br>
The second study was a qualitative study using semi-structured interviews to explore the impact of RA on leisure pursuits in 18 strategically chosen patients with RA. Three descriptive categories were found, namely constraints containing four conceptions: experiencing limitations, needing time, finding a balance, and being dependent. Coherence containing four conceptions: accepting feelings, participating in a social context, being active, and having insight. Solutions containing three conceptions: choosing, planning, and adapting. Patients with RA experienced restrictions when performing leisure activities due to constraints and coherence but they tried to find solutions to their problems.<br/><br>
<br/><br>
The third study is a prospective, controlled study of 196 newly diagnosed patients with RA. One hundred and forty-seven patients were followed longitudinally, and 144 had a matched control from the Swedish population census register at baseline. The following variables were measured at baseline, after 6,12,18,24,36, 60 months and follow-up in RA patients VAS-pain, VAS global assessment, ESR, CRP, rheumatoid factor (RF), swollen and tender joints out of 28, the medical practitioner's judgement of disease activity, and disease activity score (DAS28). The following measures were performed both in RA and control group, HAQ, education, occupation, and NPS-index. Patients with RA diagnosed at an early stage performed fewer leisure activities compared to controls, a difference observed only among persons with low level of education. Factors independently associated and partially correlated with the number of leisure activities domains performed at baseline were age, education, HAQ, and the number of domains interested in. No change on group level was seen during follow-up, but domains of leisure activities changed during follow up and activities performed in outdoor life and exercise in individual sports increased significantly in women. Patients both stopped and started a substantial number of leisure activities on an individual level. The severity of the disease did not at all predict these individual changes at all, although the accumulated burden of disability during follow up tended to. Active recreation beside health was one of the most affected domains of QOLS.<br/><br>
<br/><br>
In the fourth study a new leisure index the PSLS were evaluated regarding reliability, validity and responsiveness. Forty-nine consecutive RA patients participated in test-retest, 100 RA-patients in construct validity and 25 RA-patients in responsiveness (after three months of TNF inhibitors). The PSLS appeared to be feasible, reliable, valid and responsive for measuring leisure activities.<br/><br>
<br/><br>
I found in these four studies that commonly used variables for measuring disease activity did not predict change in leisure activities, and that disability only moderately predicts such change. Other predictors must be sought, perhaps more related to personality and individual resources. I also found that patients with RA experienced restrictions when performing leisure activities due to constraint and coherence but that they tried to find solutions to their problems. The PSLS seems reliable and valid for measuring leisure activities among patients with RA. Active recreation beside health was one of the most affected domains of QOLS.},
  author       = {Wikström, Ingegerd},
  isbn         = {91-85559-43-1},
  issn         = {1652-8220},
  keyword      = {Leisure activities,assessments,validity,reumatologi,muskelsystem,Skelett,reliability,muscle system,rheumatoid arthritis,associated factors,predictors,quality of life,rheumatology locomotion,occupational therapy,Skeleton},
  language     = {eng},
  pages        = {130},
  publisher    = {Department of Rheumatology, Lund University},
  school       = {Lund University},
  title        = {Leisure Activities in Rheumatoid Arthritis. Associated Factors and Assessment},
  year         = {2006},
}