Description: The Neck Pain and Disability Scale (NPDS or NPAD) is a questionnaire aiming to quantify neck pain and disability.1 It is a patient-reported outcome measure for patients with any type of neck pain, of any duration, with or without injury.1,2 It consists of 20 items: three related to pain intensity, four related to emotion and cognition, four related to mobility of the neck, eight related to activity limitations and participation restrictions and one on medication.1,3 Patients respond to each item on a 0 to 5 visual analogue scale of 10 cm. There is also a nine-item short version.4 Feasibility: The NPDS is published and available online (https://mountainphysiotherapy.com.au/wp-content/uploads/2016/08/Neck-Pain-and-Disability-Scale.pdf).1 The NPDS is an easy to use questionnaire that can be completed within 5 to 8 minutes.1,5 There is no training needed to administer the instrument but its validity is compromised if the questionnaire must be read to the patient.2 Higher scores indicate higher severity (0 for normal functioning to 5 for the worst possible situation ‘your’ pain problem has caused you).2 The total score is the sum of scores on the 20 items (0 to 100).1 The maximum acceptable number of missing answers is three (15%).4 Two studies found a minimum important change of 10 points (sensitivity 0.93; specificity 0.83) and 11.5 points (sensibility 0.74; specificity 0.70), respectively.6,7 The NPDS is available in English, Dutch, Finnish, French, German, Italian, Hindi, Iranian, Korean, Turkish, Japanese and Thai. Reliability and validity: Two systematic reviews have evaluated the clinimetric properties of 11 of the translated versions.5,8 The Finnish, German and Italian translations were particularly recommended for use in clinical practice. Face validity was established and content validity was confirmed by an adequate reflection of all aspects of neck pain and disability.1,8 Regarding structural validity, the NPDS is a multidimensional scale, with moderate evidence that the NPDS has a three-factor structure (with explained variance ranging from 63 to 78%): neck dysfunction related to general activities; neck pain and neck-specific function; and cognitive-emotional-behavioural functioning. 4,5,9 A recent overview of four systematic reviews found moderate-quality evidence of high internal consistency (Cronbach’s alphas ranging from 0.86 to 0.93 for the various factors).10 Excellent test-retest reliability was found (ICC of 0.97); however, the studies were considered to be of low quality.3,10 Construct validity (hypotheses-testing) seems adequate when the NPDS is compared with the Neck Disability Index and the Global Assessment of Change with moderate to strong correlations (r = 0.52 to 0.86), based on limited moderate-quality studies.3,11,12 One systematic review reported good responsiveness to change in patients (r = 0.59).12
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Objective: The majority of parents with a disabled child experience chronic sorrow, characterized by recurrent feelings of grief and loss related to their child’s disability. There is a significant lack of research on parents’ lived experiences of chronic sorrow, which limits our ability to understand parents’ needs and provide proper support. Design: Interpretative Phenomenological Analysis (IPA) was conducted based on in-depth interviews with six parents of severely disabled children. Results: In the literature on chronic sorrow, an important aspect has been consistently overlooked: the particular position of being a parent, experiencing an awareness of being ultimately responsible for their children. The analysis revealed how this awareness, experienced as a deeply felt ethical commitment, unconditional, largely in isolation, and without a limit in time, shaped the experience of chronic sorrow. Because of this awareness, the parents experienced themselves facing a Herculean task of navigating their intricate motions while struggling to maintain their ability to function. Conclusions: By revealing the importance of considering the unique parental position, the study enriches the concept of chronic sorrow, simultaneously offering insights into what it means to be a parent of a disabled child. These insights can improve care professionals’ responsiveness to parental needs.
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BACKGROUND: In typically developing children, participation in sports has been proven to be positively correlated to both physical and psychosocial health outcomes. In children and adolescents with a physical disability or chronic disease participation in both recreational and competitive sports is often reduced, while for this population an active lifestyle may be even more important in reaching optimal levels of physical and psychosocial health. Therefore, the aim of the Health in Adapted Youth Sports (HAYS) Study is to determine both negative and positive effects of sports on children and adolescents with a chronic disease or physical disability. METHODS: In this cross-sectional study differences will be compared in regards to physical and psychosocial health, cognitive functioning, school performance, daily physical activity and injuries between children and adolescents with a chronic disease or physical disability who participate in sports and those who do not. Children and adolescents, both ambulatory and wheelchair dependent, in the age of 10-19 years with a physical disability or chronic disease will be included. "Sports" is defined as participation in an organized sport at least two times a week for a duration of 3 months or more prior to the assessment. Parametric and non-parametric statistics will be used to determine the differences between the two groups. DISCUSSION: This study provides insight in the effects of sports participation in relation to health, psychosocial functioning, physical activity and school performance in children and adolescents (10-19 years) with a chronic disease or physical disability. Results will guide healthcare professionals working with these children to better guide this population in reaching optimal levels of health and physical activity levels.
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The pressure on the European health care system is increasing considerably: more elderly people and patients with chronic diseases in need of (rehabilitation) care, a diminishing work force and health care costs continuing to rise. Several measures to counteract this are proposed, such as reduction of the length of stay in hospitals or rehabilitation centres by improving interprofessional and person-centred collaboration between health and social care professionals. Although there is a lot of attention for interprofessional education and collaborative practice (IPECP), the consortium senses a gap between competence levels of future professionals and the levels needed in rehabilitation practice. Therefore, the transfer from tertiary education to practice concerning IPECP in rehabilitation is the central theme of the project. Regional bonds between higher education institutions and rehabilitation centres will be strengthened in order to align IPECP. On the one hand we deliver a set of basic and advanced modules on functioning according to the WHO’s International Classification of Functioning, Disability and Health and a set of (assessment) tools on interprofessional skills training. Also, applications of this theory in promising approaches, both in education and in rehabilitation practice, are regionally being piloted and adapted for use in other regions. Field visits by professionals from practice to exchange experiences is included in this work package. We aim to deliver a range of learning materials, from modules on theory to guidelines on how to set up and run a student-run interprofessional learning ward in a rehabilitation centre. All tested outputs will be published on the INPRO-website and made available to be implemented in the core curricula in tertiary education and for lifelong learning in health care practice. This will ultimately contribute to improve functioning and health outcomes and quality of life of patients in rehabilitation centres and beyond.
