Measuring the impact of health problems among adults with limited mobility in Thailand: further validation of the Perceived Impact of Problem Profile

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Measuring the impact and distress of health problems from the individual's perspective: development of the Perceived Impact of Problem Profile (PIPP)

BACKGROUND: The aim of this study was to develop and conduct preliminary validation of the Perceived Impact of Problem Profile (PIPP). Based on the biopsychosocial model of health and functioning, the PIPP was intended as a generic research and clinical measurement tool to assess the impact and distress of health conditions from the individuals' perspective. The ICF classification system was used to guide the structure of the PIPP with subscales included to assess impact on self-care, mobility, participation, relationships and psychological well-being. While the ICF focuses on the classification of objective health and health related status, the PIPP broadens this focus to address the individuals' subjective experience of their health condition. METHODS: An item pool of 23 items assessing both impact and distress on five key domains was generated. These were administered to 169 adults with mobility impairment. Rasch analysis using RUMM2020 was conducted to assess the psychometric properties of each set of items. Preliminary construct validation of the PIPP was performed using the EQ5D. RESULTS: For both the Impact and Distress scales of the PIPP, the five subscales (Self-care, Mobility, Participation, Relationships, and Psychological Well-being) showed adequate psychometric properties, demonstrating fit to the Rasch model. All subscales showed adequate person separation reliability and no evidence of differential item functioning for sex, age, educational level or rural vs urban residence. Preliminary validity testing using the EQ5D items provided support for the subscales. CONCLUSION: This preliminary study, using a sample of adults with mobility impairment, provides support for the psychometric properties of the PIPP as a potential clinical and research measurement tool. The PIPP provides a brief, but comprehensive means to assess the key ICF components, focusing on the individuals' perspective of the impact and distress caused by their health condition. Further validation of its use across different health conditions and varying cultural settings is required

Measuring the impact and distress of osteoarthritis from the patients' perspective

<p>Abstract</p> <p>Background</p> <p>To assess the internal construct validity of the Perceived Impact of Problem Profile (PIPP), a patient based outcome measure based on the International Classification of Functioning, Disability and Health (ICF), which assesses impact and distress, in an osteoarthritis (OA) cohort.</p> <p>Methods</p> <p>A questionnaire comprising the 23-item PIPP, which assesses five domains (mobility, participation, self care, psychological well being and relationships), the Western Ontario McMasters University Osteoarthritis Index (WOMAC), the General Well-Being Index (GWBI), and the Hospital Anxiety and Depression Scale (HADS) was posted to people with clinician diagnosed OA. Assessment of the internal construct validity of the PIPP was undertaken using Rasch analysis performed with RUMM2020 software and concurrent validity through comparator measures.</p> <p>Results</p> <p>Two hundred and fifty-nine participants with OA responded. Analysis of the five individual domains of the PIPP indicated that there was good fit to the Rasch model, with high person separation reliability. One item required removal from the Mobility subscale and the Participation subscale. There were strong correlations between the PIPP Mobility scores and the WOMAC disability and pain subscales (rho = .73 and rho = .68), and between the PIPP Psychological well-being and HADS Depression (rho = .71) and GWBI (rho = -.69). High inter-correlations between the impact and distress subscales for each domain (range rho = .85 to .96), suggested redundancy of the latter.</p> <p>Conclusion</p> <p>This study demonstrates that the PIPP has good psychometric properties in an OA population. The PIPP, using just the impact subscales, provides a brief, reliable and valid means of assessing the impact of OA from the individual's perspective and operationalizing the bio-psychosocial model by the application of a single multi-domain questionnaire.</p

Homeostatic mechanism : subjective quality of life and chronic pain

Investigates the maintenance of subjective quality of life in the presence of chronic pain. A homeostatic mechanism is proposed and examined in terms of the roles of the suggested components and how these are altered by the threat of chronic pain

A conceptual map of health-related quality of life dimensions: key lessons for a new instrument

Purpose - Quality-adjusted life years (QALYs) represent a critical metric in economic evaluations impacting key healthcare decisions in many countries. However, there is widespread disagreement as to which is the best of the health state utility (HSU) instruments that are designed to measure the Q in the QALY. Instruments differ in their descriptive systems as well as their valuation methodologies; that is, they simply measure different things. We propose a visual framework that can be utilized to make meaningful comparisons across HSU instruments. Methods - The framework expands on existing HRQoL models, by incorporating four distinctive continua, and by putting HRQoL within the broader notion of subjective well-being (SWB). Using this conceptual map, we locate the five most widely used HSU-instruments (EQ-5D, SF-6D, HUI, 15D, AQoL). Results - By individually mapping dimensions onto this visual framework, we provide a clear picture of the significant conceptual and operational differences between instruments. Moreover, the conceptual map demonstrates the varying extent to which each instrument moves outside the traditional biomedical focus of physical health, to also incorporate indicators of mental health and social well-being. Conclusion - Our visual comparison provides useful insights to assess the suitability of different instruments for particular purposes. Following on from this comparative analyses, we extract some important lessons for a new instrument that cover the domains of physical, mental and social aspects of health, i.e. it is in alignment with the seminal 1948 WHO definition of health

A conceptual map of health-related quality of life dimensions: key lessons for a new instrument

Purpose - Quality-adjusted life years (QALYs) represent a critical metric in economic evaluations impacting key healthcare decisions in many countries. However, there is widespread disagreement as to which is the best of the health state utility (HSU) instruments that are designed to measure the Q in the QALY. Instruments differ in their descriptive systems as well as their valuation methodologies; that is, they simply measure different things. We propose a visual framework that can be utilized to make meaningful comparisons across HSU instruments. Methods - The framework expands on existing HRQoL models, by incorporating four distinctive continua, and by putting HRQoL within the broader notion of subjective well-being (SWB). Using this conceptual map, we locate the five most widely used HSU-instruments (EQ-5D, SF-6D, HUI, 15D, AQoL). Results - By individually mapping dimensions onto this visual framework, we provide a clear picture of the significant conceptual and operational differences between instruments. Moreover, the conceptual map demonstrates the varying extent to which each instrument moves outside the traditional biomedical focus of physical health, to also incorporate indicators of mental health and social well-being. Conclusion - Our visual comparison provides useful insights to assess the suitability of different instruments for particular purposes. Following on from this comparative analyses, we extract some important lessons for a new instrument that cover the domains of physical, mental and social aspects of health, i.e. it is in alignment with the seminal 1948 WHO definition of health

Volunteering and civic participation in the Vietnamese-Australian community

Civic participation can be defined not only as civic-minded behaviors, including volunteering, but also acts of generosity and altruism (Mason et al., 2007). It is considered a prerequisite for social cohesion and a fundamental building block of healthy social, civic, and political life in a democracy (Putnam, 2007). It is argued that active civic participation both benefits the wider society and contributes substantially to the well-being of individuals themselves (e.g., Parkinson et al., 2010; Piliavin and Siegl, 2007)

Understandings and applications of self-compassion and self-coldness among Hazaras in Australia: a qualitative study

Emerging research suggests that self-compassion and self-coldness are involved in the treatment of psychological difficulties among refugees and asylum seekers. Self-compassion involves treating oneself with warmth and care and self-coldness involves treating oneself with harsh judgement. We aimed to explore the unique understandings and applications of self-compassion and self-coldness among Hazara asylum seekers and refugees in Australia. Eleven Hazaras (ninemen and two women) who were seeking asylum or had a refugee background were interviewed about their understandings and applications of self-compassion and self-coldness. Transcripts of interview recordings were analysed using reflexive thematic analysis. Participants reported wide variation in their understandings and applications of self-compassion and self-coldness. Participants broadly reported difficulties turning inwards with self-compassion. Participants also tended to place the needs of others before their own because of their histories and community/cultural ideas about self-compassion, such as self-compassion being selfish or justified only if in service of others. Experiencing significant external stressors, such as long standing family separation and visa insecurity, were also barriers to contacting private experiences. The current study identified several important barriers among the Hazara community in applying self-compassion. Descriptive terms for self-compassion and self-coldness are also provided by the community and might inform clinical approaches. Hazara refugees and asylum seekers in Australia report significant contextual barriers and concerns about their mental health and separation from family.Self-compassion and self-coldness are psychological variables which have been implicated in mental health outcomes including recovery from refugee trauma.To the authors’ knowledge, no previous studies have explored the understandings and applications of self-compassion and self-coldness among Hazara asylum seekers and refugees. Hazara refugees and asylum seekers in Australia report significant contextual barriers and concerns about their mental health and separation from family. Self-compassion and self-coldness are psychological variables which have been implicated in mental health outcomes including recovery from refugee trauma. To the authors’ knowledge, no previous studies have explored the understandings and applications of self-compassion and self-coldness among Hazara asylum seekers and refugees. Hazaras reported difficulties turning inwards instead prioritising the needs of others which might influence the adoption of self-compassion.Community views of self-compassion and self-coldness further influenced their understanding and application of self-compassion and self-coldness.Hazaras also provided unique descriptions of self-compassion and self-coldness which might be useful when working clinically with this group. Hazaras reported difficulties turning inwards instead prioritising the needs of others which might influence the adoption of self-compassion. Community views of self-compassion and self-coldness further influenced their understanding and application of self-compassion and self-coldness. Hazaras also provided unique descriptions of self-compassion and self-coldness which might be useful when working clinically with this group.</p

Endometriosis Symptomatology, Dyspareunia, and Sexual Distress Are Related to Avoidance of Sex and Negative Impacts on the Sex Lives of Women with Endometriosis

Background: Endometriosis affects approximately 10% of women and is associated with a range of symptoms including pelvic pain, abnormal bleeding, and painful sexual intercourse. However, very little is known about the relationship between endometriosis-related symptoms and sex. Methods: Women with a diagnosis of endometriosis (n = 2060; mean age = 30 years) completed a questionnaire measuring the frequency of endometriosis symptoms, dyspareunia, sexual distress, avoidance of sex, and the perceived negative impact of endometriosis symptoms on sex life. Results: In bivariate and multivariate logistic regression models with avoidance of sex and perceived negative impact of endometriosis symptoms on sex life as DVs, higher endometriosis symptom frequency, dyspareunia, and sexual distress were associated with greater avoidance of sex and higher perceived negative impact of endometriosis symptoms on sex life. With a two- and three-fold increase in the odds of avoiding sex and reporting a negative impact of endometriosis on sex lives, respectively, for each point increase in dyspareunia. Similarly, there was a 7% to 11% increase in avoidance of sex and the negative impact of endometriosis on sex lives, per one-point increase in symptom frequency and sexual distress. Conclusions: The results highlight the considerable impacts of endometriosis symptomatology on women’s sex lives and wellbeing. Better medical and counselling services may be needed to ameliorate the negative impact of endometriosis on women’s sex lives