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Pain Beliefs and Quality of Life in Young People With Disabilities and Bothersome Pain.

ABSTRACT: OBJECTIVES:Pain beliefs have been hypothesized to play an important role in pediatric pain. However, research examining the associations between pain-related beliefs and measures of function in youths with disabilities is limited. METHODS:In total, 84 youths (mean age, 14.26 y; SD, 3.27) with physical disabilities who indicated they also had bothersome pain were interviewed and asked to rate their average pain intensity in the past week and to complete measures of pain-related beliefs and health-related quality of life. RESULTS:A number of pain beliefs were associated with different physical and psychosocial function domains, although different beliefs appeared to play different roles, depending on the function domain examined. Across all of the health-related quality-of-life domains studied, a belief that pain is influenced by one's emotions was associated with lower levels of function. No differences were found in pain beliefs related to age. In addition, a small difference in pain beliefs was found for sex; specifically, girls were more likely than boys to endorse the belief that pain is influenced by emotions. DISCUSSION:The findings provide new information regarding the role that pain beliefs have in predicting function and have important clinical implications regarding how youth with physical disabilities and pain might be most effectively treated.

SUBMITTER: Miro J

PROVIDER: S-EPMC5522362 | biostudies-literature | 2017 Nov

REPOSITORIES: biostudies-literature

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Pain Beliefs and Quality of Life in Young People With Disabilities and Bothersome Pain.

Miró Jordi J Solé Ester E Gertz Kevin K Jensen Mark P MP Engel Joyce M JM

The Clinical journal of pain 20171101 11

<h4>Objectives</h4>Pain beliefs have been hypothesized to play an important role in pediatric pain. However, research examining the associations between pain-related beliefs and measures of function in youths with disabilities is limited.<h4>Methods</h4>In total, 84 youths (mean age, 14.26 y; SD, 3.27) with physical disabilities who indicated they also had bothersome pain were interviewed and asked to rate their average pain intensity in the past week and to complete measures of pain-related bel ...[more]

PMID: 28118258

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Project description:ObjectivesTo investigate the suitability of the revised Illness Perception Questionnaire (IPQ-R) for use with adolescents with a long-term pain condition and to validate a new questionnaire for use with this age group.DesignA three-phase mixed-methods study.MethodsPhase 1 comprised in-depth qualitative analyses of audio-recorded cognitive interviews with 20 adolescents with juvenile idiopathic arthritis who were answering IPQ-R items. Transcripts were coded using framework analysis. A content analysis of their intended responses to individual items was also conducted. In Phase 2, a new questionnaire was developed and its linguistic and face validity were assessed with 18 adolescents without long-term conditions. In Phase 3, the construct validity of the new questionnaire was assessed with 240 adolescents with juvenile idiopathic arthritis. A subset of 43 adolescents completed the questionnaire a second time to assess test-retest reliability. All participants were aged 11-16 years.ResultsParticipants described both conceptual and response format difficulties when answering IPQ-R items. In response, the Pain Perception Questionnaire for Young People (PPQ-YP) was designed which incorporated significant modifications to both wording and response formats when compared with the IPQ-R. A principal component analysis of the PPQ-YP identified ten constructs in the new questionnaire. Emotional representations were separated into two constructs, responsive and anticipatory emotions. The PPQ-YP showed high test-retest reliability.ConclusionsSymptom beliefs appear to be more salient to adolescents with a long-term pain condition than beliefs about the illness as a whole. A new questionnaire to assess pain beliefs of adolescents was designed. Further validation work may be needed to assess its suitability for use with other pain conditions. Statement of contribution What is already known on this subject? Versions of the adult Revised Illness Perception Questionnaire (IPQ-R) have been adapted for adolescents and children by changing item wording; however, research to assess the degree to which the underlying IPQ-R constructs are relevant to adolescents with a long-term condition had not been performed. What the present study adds? In adolescents, beliefs about symptoms of their condition are more salient than beliefs about the illness as a whole. Question response formats for children and young people need to take account of age-specific abilities. A new questionnaire has been designed for adolescents with pain. It is theoretically congruent with the CS-SRM.

Project description:BackgroundThe concept of health-related quality of life and education integrates the bio-psychosocial perspective of health and the multidimensional potentialities of education for wellbeing. This present work is especially relevant to young people because understanding the interaction between health and education can facilitate the design of preventive policies. The research examines the way in which the educational level of young people from an urban district in the city of Zaragoza (Casablanca) has an influence on their health-related quality of life (HRQOL).MethodsA cross sectional survey was undertaken in the Casablanca district of Zaragoza (Spain). Participants were not randomly selected; their numbers reflected the areas where they lived with respect to age and sex distribution. It comprised 122 boys and 122 girls, aged between16 and 29, living in the neighbourhood are: Viñedo Viejo, Las Nieves and Fuentes Claras. These three residence zones are markedly different in terms of socioeconomic composition. The questionnaire included the following information: socioeconomic characteristics (sex, age, educational level, employment status, residence zone), an assessment of health (health problems, diagnosis and medication in the last 2?weeks) and HRQOL (WHOQOL-BREF dimensions: mental health; physical health; social relations; and environment). ANOVA and four regression models were used to assess the role, direction and intensity of educational level on HRQOL.ResultsThe results show that the higher the level of education, the better the level of HRQOL. The biggest impact of education was on the mental health dimension, but this influence was modulated by sex and residence zone. The value of the interaction of education and residence zone was more significant than educational level alone. HRQOL of girls is more sensitive to education, being a student and residence zone than the HRQOL of boys.ConclusionsThe dimensions of HRQOL are influenced by educational level. The influence is greatest among girls and the youngest members of the poorest area of the district. Public authorities should contemplate the development of an equitable education system from the beginning of the life cycle as a public health strategy.

Project description:BackgroundA collaborative approach is critical in inclusive research and should incorporate taking time to build relationships with co-researchers based on trust and shared understanding. Involvement can often be seen as tokenistic and in order to avoid this, it is important to provide opportunities for people to exercise choice throughout the research process.Main bodyThe current paper outlines learnings from a co-researcher training process for young people with disabilities to identify the ways in which meaningful choice can be facilitated with this group. While conducting training of co-researchers in topics such as research methods, we were continuously led by the group with regards to the directions that the sessions took and promoted problem solving with the group to accommodate the unique needs of all members. The overall aim of a wider project was to develop research capacity in a group of young people with disabilities through co-researcher training and this paper will report on learnings from this work with regards to how we sought to provide opportunities for the co-researchers to exercise choice within research projects. Feedback from the group of young people highlighted the variety of needs and expectations that must be accommodated in such a process and therefore, allowing them to dictate the extent and manner of their engagement is key. Young people with disabilities are a heterogeneous group and therefore, some methodologies and ways of working required adaptation in order to facilitate meaningful choice and engagement for all.ConclusionProviding meaningful opportunities for demonstrating their choices, in relation to elements of research projects, is a critical component of facilitating a rights-based approach when conducting co-research and requires researchers to cede some level of control over the research process to co-researchers. This can be difficult to achieve in practice and researchers must continuously reflect on their own practice and be willing to change and adapt throughout the process.

Project description:BackgroundNarcolepsy is a lifelong sleep disorder with a prevalence of between 0.03% and 0.06% and onset at around puberty. It is associated with psychiatric comorbidities and cognitive difficulties. No valid and reliable condition-specific health-related quality-of-life (HrQoL) instrument has been developed for this population.MethodsA questionnaire based on four mixed-gender age-defined focus group discussions and a patient panel analysis was administered to young people with narcolepsy and a control group. External reliability was measured by a test-retest procedure and internal reliability was measured using Cronbach's alpha. Convergent validity with the KIDSCREEN-10 index was assessed using with intraclass correlation coefficients (ICC) and receiver operating characteristic (ROC) curves. Factor analysis techniques were used to identify suitable items and confirm the factor structure. Baseline values were assessed for convergent validity, ceiling effects, agreement and sensitivity. Comparison with KIDSCREEN-10 was made on the basis of area under the curve (AUC).ResultsOne hundred young people with narcolepsy and 95 control subjects returned questionnaires. The factor structure revealed two main factors with five domains and 21 questions, which was confirmed with confirmatory factor analysis. The domains of the NARQoL-21 showed good independence while the floor and ceiling effects were acceptable. The external reliability (0.928), convergent validity (rs?=?0.769) and internal consistency (Cronbach's alpha?=?0.886) were excellent. A Bland-Altman plot revealed some proportional bias. Good discriminant validity was detected for control/patient (Cohen's d?=?2.114). ROC analysis showed significantly better AUC for NARQoL-21 (0.939) than KIDSCREEN (0.877). A cut-off score equivalent to KIDSCREEN-10 for suboptimal HrQoL which maximized sensitivity (84%) and specificity (92%) was found at NARQoL-21 score below 42.ConclusionsEstablishing the validity of a disease-specific HrQoL instrument in a population of people with a rare condition poses significant challenges. The mixed-methods approach adopted here has resulted in a questionnaire of 21 items with good discrimination and convergent validity, and excellent internal and external reliability, allowing precise and stable measurements. The cut-off score can be useful to identify patients with very poor HrQoL and thus improve the design of treatment options. Further testing in a longitudinal cohort is recommended in order to establish responsiveness.

Dataset Information

Pain Beliefs and Quality of Life in Young People With Disabilities and Bothersome Pain.

Publications

Pain Beliefs and Quality of Life in Young People With Disabilities and Bothersome Pain.

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