A study to evaluate nurse-led on-treatment review for patients undergoing radiotherapy for head and neck cancer

Aims and objectives. To evaluate a nurse‐led clinic for patients undergoing radiotherapy to the head and neck. Background. The side effects of radiotherapy to the head and neck are superimposed on already significant physical and psychological morbidity. Medical review clinics tend to focus on treatment complications and there is evidence that specialist nurses can provide more holistic care for patients. However, doubts have been raised about the appropriateness of nurse‐led review in this highly symptomatic and complex group. Design. This evaluation compared medical on‐treatment review (Phase 1) with a nurse‐led clinic (Phase 2) for patients having radiotherapy to the head and neck, using an historical control group. Methods. Twenty patients were reviewed by their consultant and 23 by a nurse specialist, using a clinic protocol. A mixed‐method approach to data collection was taken. Patients completed weekly quality of life questionnaires and were asked about their experiences of support and care. General practitioners completed a questionnaire about the communication received from the clinic. Checklists assessed the content of clinic consultations. Results. Patients valued the relationship developed with the nurse specialist, had longer, more frequent consultations and were more often referred to the multidisciplinary team. The nurse specialist managed 83% of consultations without referral to the consultant. Few significant differences in quality of life were found between the groups. There were indications that oral and nutritional problems were managed more effectively in the nurse‐led clinic, although emotional functioning was higher in the medical group. GPs were positive about the timing and content of information received. Conclusions. On‐treatment review for patients with head and neck cancer can be effectively managed by a nurse specialist. Relevance to Practice. Radiotherapy nurse specialists make an important contribution to the supportive care of patients with head and neck cancer. More investment is required to maximize their contribution.     

Factors associated with migraine-related quality of life and disability in adolescents: a preliminary investigation

OBJECTIVES: This study examined factors associated with impaired quality of life and functioning in a sample of treatment-seeking adolescent migraineurs. Subjects.-The 37 participants were 51.4% female, and averaged 14.3 years of age and 4.1 migraines per month for the previous 36 months. PROCEDURE: The Migraine-Specific Quality of Life Questionnaire, questionnaire items inquiring about missed activities, and headache diary recordings of missed and impaired activity time served as dependent measures. Variables studied were age; gender; migraine frequency, duration, and severity; presence of nausea, photophobia, or phonophobia; and number of visits to an emergency department in the previous year. RESULTS: Three hierarchical forward regressions and one logistic regression, controlling for age and gender, revealed that the presence of nausea and at least one emergency department visit predicted poorer quality of life and a greater number of missed activities in these adolescent migraineurs. The presence of migraine-related missed activity hours from headache diaries was predicted by being male, having higher combined photophobia and phonophobia sensitivity scores, as well as more frequent and severe migraines. Greater impairment was predicted by having longer average duration attacks. CONCLUSIONS: These preliminary findings suggest that the continued development of effective treatment approaches to alleviate pain, suffering, and disability in adolescent migraineurs is required. In particular, evidence for the impact of nausea and sensitivities suggests that they may be important targets for treatment. As well, adolescent migraineurs with a history of a visit to an emergency department in the previous year likely experience greater individual and family distress, more disability, and poorer quality of life that require thoughtful, comprehensive treatment to prevent the development of more severe headache difficulties.     

International classification of functioning,disability and health in children with cerebral palsy

Purpose: We intended to describe how concepts from recent models of disability have been studied for evaluation of children with cerebral palsy (CP) and their clinical implications. Method: We revised studies that focused on the components of the International Classification of Functioning, Disability and Health (ICF) in children with CP. Results: Researchers have reported that children with CP exhibit impairments in various body functions/structures, limitations in functional activities performance and experience poorer participation outcomes than their typical peers. Moreover, it has been showed that participation of children with CP was affected by environmental factors. Conclusion: Therefore, evaluation and rehabilitation processes should be focused on the quality of life improvement by emphasizing what a child can and wants to execute within the environment. Also, environmental factors should be recognized so that barriers could be minimized and adaptations to the environment achieved. However, few studies have verified the interrelationship between contextual factors and the functioning and disability domains in children with CP. This would allow us to know about approaches specifically designed for these children’s needs.

Implications for Rehabilitation

• Cerebral palsy is a disabling disease which impacts in body structures and functions, functional activities performance and social participation.

• ICF is a model of disability that focuses on the integration of these three dimensions.

• The knowledge about the concepts of ICF applied in children with CP allows an evidence-based practice.

     

Reactions to invisible disability: The experiences of young women survivors of hemorrhagic stroke

Purpose.?To discuss how young, female and invisibly disabled, long-term survivors of hemorrhagic stroke experience the reactions of others as they negotiate the social environment.

Method.?Open-ended and in-depth interviews were conducted with 22 women to learn about their post-stroke experiences, and the interviews were analyzed for common issues and themes.

Results.?Participants expressed concerns about the reactions of others in the context of discussing popular understandings about who is affected by stroke, and the significance of having invisible disabilities. Participants' experiences were mediated by the cultural belief that stroke is a disease of old age, and by the belief that disabilities worth taking seriously are readily visible. The existence of these beliefs about stroke and disability made it difficult for participants to deal with the reactions of others.

Conclusions.?Participants must negotiate their everyday lives within a social context that they are ill-prepared to deal with. Rehabilitation practices need to take this into account and counsel stroke survivors about what to expect and what they need to do for a good QOL in the community.     

The complex interplay between pain intensity,depression, anxiety and catastrophising with respect to quality of life and disability

Purpose. To identify subgroups of patients with chronic pain based on the occurrence of depression, anxiety and catastrophising and the duration of pain and pain intensity. In addition to this, the relationship between the subgroups with respect to background variables, diagnosis, pain-related disability and perceived quality of life are investigated.

Methods. This study used 433 patients with chronic pain including 47 patients with spinal cord injury-related pain, 150 with chronic whiplash associated disorders and 236 with fibromyalgia. The participants answered a postal questionnaire that provided background data, pain intensity and duration and psychological and health-related items.

Results. On the basis of depression, anxiety, catastrophising, pain intensity and duration, we identified subgroups of patients with chronic pain that differed with respect to perceived quality of life, disability and diagnosis. The psychological factors, especially depression, significantly influenced perceived quality of life and disability. Pain intensity and duration play a minor role with respect to quality of life, although pain intensity is associated to perceived disability.

Conclusions. The results of this study highlight the importance of not looking at patients with chronic pain as a homogenous entity. A detailed assessment, including psychological factors with emphasis on depressive symptoms, might be essential for planning and carrying through treatment and rehabilitation.     

The effectiveness of therapeutic interventions on quality of life for vitiligo patients: A systematic review

This paper reviews the effectiveness of therapeutic interventions on quality of life for adult patients with vitiligo. We systematically searched nine databases from 1990 to February 2010 and reviewed randomized controlled trials and quasi-experimental studies of current therapeutic interventions for vitiligo, including oral, topical, combination, camouflage, cognitive-behavioural therapy and grafting. Quality of life outcomes were collected. The Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument was used for quality assessment. Nine studies were included for this review, and all treatments were found to improve quality of life for vitiligo patients. Disease-altering interventions were effective in improving quality of life. Lifestyle-altering interventions were found to be selectively effective for patients with more severe quality of life impairment. Current interventions for vitiligo are effective in improving quality of life either by enhancing physical appearance of the patient or by addressing the psychological distress directly. Less effectiveness was achieved for the functional and social dimensions, which are more dependent on social and cultural norms. This suggests that current interventions alone are inadequate to address the holistic quality of life challenges associated with vitiligo.     

Exploring the psychometric properties of self-report instruments used to measure health-related quality of life and subjective wellbeing of adolescents with intellectual disabilities: A Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) systematic review

Background

Studies that have systematically reviewed the psychometric properties of health-related quality of life (HRQoL) and subjective wellbeing instruments for adolescents with intellectual disabilities narrowly focus on disease or health-specific conditions. This review aimed to critically appraise the psychometric properties of self-report instruments used to measure HRQoL and subjective wellbeing of adolescents with intellectual disabilities.

Method

A systematic search was undertaken in four databases. The quality of the included studies and their psychometric properties was assessed according to the COnsensus-based Standards for the selection of health Measurement Instruments Risk of Bias checklist.

Results

Seven studies reported psychometric properties of five different instruments. Only one instrument identified as having potential to be recommended for use but requires further validation research to assess its quality for this population.

Conclusions

There is insufficient evidence to support the recommendation of a self-report instrument to assess HRQoL and subjective wellbeing of adolescents with intellectual disabilities.     

Assessing physical function and activity for survivors of a critical illness: A review of instruments

Background

Functional outcomes and health-related quality of life are important measures for survivors of a critical illness. Studies have demonstrated debilitating physical effects for a significant proportion of surviving patients, particularly those with intensive care unit-acquired weakness. Contemporary practice changes include a focus on the continuum of critical illness, with less sedation and more physical activity including mobility while in ICU, and post-ICU and post-hospitalisation activities to support optimal recovery. How to best assess the physical function of patients at different phases of their recovery and rehabilitation is therefore important.

Purpose

This narrative review paper examined observational and functional assessment instruments used for assessing patients across the in-ICU, post-ICU and post-hospital continuum of critical illness.

Methods

Relevant papers were identified from a search of bibliographic databases and a review of the reference list of selected articles. The clinimetric properties of physical function and HRQOL measures and their relevance and utility in ICU were reported in narrative format.

Findings

The review highlighted many different instruments used to measure function in survivors of ICU including muscle strength testing, functional tests and walk tests, and patient centred outcomes such as health related quality of life. In general, the sensitivity and validity of these instruments for use with survivors of a critical illness has not yet been established.

Conclusion

Based on findings from the review, screening of patients using reliable and valid instruments for ICU patients is recommended to inform both practice and future studies of interventions aimed at improving recovery and rehabilitation.     

Association between employment status and quality of life for individuals with intellectual or developmental disability

The current study examined how employment conditions (competitive employment, work center employment, unemployment) are associated with the quality of life (QoL) for individuals with intellectual or developmental disabilities. Using the Comprehensive Quality of Life Scale – Intellectual/Cognitive Disability (5th Edition; ComQoL-I5; Cummins, 1997a) to measure objective QoL factors, and the PWI-ID (Personal Wellbeing Index – Intellectual Disability, 3rd Edition; Cummins & Lau, 2005b) to measure subjective well-being, participants answered self-reporting questions regarding the seven QoL domains. Kruskal–Wallis H for Oneway Analysis of Variance was used to determine statistical significance between comparison work conditions. Results indicate significant findings in the objective QoL domains of Material Well-Being, Productivity, and Safety between the work conditions for individuals with intellectual and developmental disabilities, with participants in the competitive-employment group reporting the highest QoL objective scores in these areas. Implications of these findings for practice and research are discussed.     

Quality of life, disability and handicap in patients with toxic oil syndrome

AIM: This paper reports an investigation of the quality of life of patients most severely affected by toxic oil syndrome and the association between quality of life and disability variables, handicaps and depression. BACKGROUND: In 1981, an epidemic occurred in Central and Northwestern Spain. The illness, now called toxic oil syndrome (TOS), appeared to be caused by consumption of oil mixtures containing rapeseed oil denatured with aniline and affected over 20,000 individuals. Today, it is classified as a chronic disease that has resulted in a large number of sequelae. METHOD: From the 1031 people classified with permanent disability, a random sample of 292 individuals was selected. A structured interview was carried out to investigate the clinical aspects. The Nottingham Health Profile Questionnaire was used to assess quality of life. To study the relationship between quality of life and disability, handicap and depression, a univariate analysis was carried out. The chi-square test was used for inter-group comparisons. A P-value of 0.05 was adopted as the limit for inclusion of a variable in the multivariate analysis. Multivariate analysis was undertaken using logistic regression. RESULTS: Two hundred and fourteen patients were interviewed (79% response rate). Mean age was 59.3 (sd: 12.7) years. Quality of life mean score was 52.8 (sd: 22.6). The variables associated with poorer quality of life perception were depression [odds ratio (OR) = 9.66, confidence interval (CI) = 3.71-25.15], role-related disabilities (occupation role: OR = 2.82 CI = 1.28-6.22) and mobility (bending/picking up: OR = 4.74, CI = 2.31-9.72), as well as economic problems (OR = 1.62, CI = 1.07-2.46). CONCLUSION: The quality of life of those most severely affected by TOS is poor. Their health profile is characterized by depression and important functional and psycho-social disabilities that limit daily living activities and social roles, and are related to self-perceptions of poor quality of life.     

The relationship between functional disability and health-related quality of life in patients with a rotator cuff tear

Purpose:To determine the relationship between functional disability and health-related quality of life (HRQoL) in rotator cuff tear (RCT) patients. Method:In 67 RCT patients (mean age, 54 years; 57% males), functional disability was self-reported with the American Shoulder and Elbow Surgeons Standardized Shoulder Assessment Form (ASES), HRQoL with the Short-Form 36 Health Survey (SF-36), and pain by visual analogue scale. ASES results were divided into tertiles (12–38, 39–51, and 52–82). Results:Mean ASES score was 48 (range, 12–82). Patients with the highest functional disability and highest pain level had the lowest HRQoL. For the highest, middle, and lowest ASES categories, respectively, mean SF-36 Physical Component Summary (PCS) scores were 35 SD 5, 36 SD 8, and 41 SD 6 (p< 0.001) (r = 0.47 for ASES vs. PCS; p< 0.001), and Mental Component Summary (MCS) scores were 50 SD 13, 56 SD 10, and 58 SD 8 (p = 0.011) (r = 0.37 for ASES vs. MCS; p= 0.003). Conclusions: Patients with higher functional disability had lower HRQoL. RCT extensively affects patients’ lives; therefore, capturing both generic and shoulder-specific measures of RCT problems is recommended.

Implications for Rehabilitation

• Rotator cuff tears (RCTs) result from injury or degeneration, and tear prevalence increases with age.

• RCT causes disabling pain, decline in muscle strength and shoulder mobility.

• RCT patients with decreased functioning have impaired quality of life.

     

Living with a disability: a qualitative study of associations between social relations,social participation and quality of life

Purpose: We explored which shared aspects of social relations were considered important to the quality of life of persons between the ages of 10 and 40?years living with a disability. We examined how social relations were experienced as affecting quality of life and social participation.

Materials and methods: Fifteen focus groups involving 48 persons with disabilities were conducted using photo elicitation, preference ranking and props. Focus group interviews were supplemented with seven individual interviews with individuals unable to participate in focus groups. All focus group interviews and individual interviews were audiotaped, transcribed, and thematic data analysis was conducted.

Results: We identified caregiving, dependency, and understanding as essential for quality of life. Acceptance from society, discrimination and prejudice, and the ability to participate in society were also highlighted as affecting quality of life. The use of social tactics to avoid confrontation with certain aspects of their disability was common among participants.

Conclusions: Across disabilities, caregiving, dependency, understanding and acceptance, and discrimination and prejudice were all important aspects for the quality of life of the individuals. Social relations were closely related to social participation, and the latter affected the quality of life of the participants. Social tactics were used to navigate social relations.

• Implications for rehabilitation

• We suggest to formalize the concept of social tactics and use it in patient education to enhance quality of life in individuals living with disabilities.

• People may accept and learn to cope with the impact of their disability, but how they maintain their social participation and social relations also impact on their quality of life. In their assessment, professionals working with individuals with disabilities should, therefore, give more priority to analyze the impact of social relations.

• When intervening, an effort to establish and maintain social relations should be considered along with psychological help, allocation of aids and economical support aiming to enhance quality of life and social participation among individuals with disabilities.

• When evaluating efforts to improve quality of life, it is important to investigate whether the intervention has improved the social relations.