Measurement of the major ignored burden of multiple myeloma, pernicious anaemia and of other haematological conditions on partners and family members: A cross-sectional study.

BACKGROUND: Having a haematological condition can adversely affect the quality of life (QoL) of family members/partners of patients. It is important to measure this often ignored burden in order to implement appropriate supportive interventions. OBJECTIVE: To measure current impact of haematological conditions on the QoL of family members/partners of patients, using the Family Reported Outcome Measure-16 (FROM-16). METHODS: A cross-sectional study, recruited online through patient support groups, involved UK family members/partners of people with haematological conditions completing the FROM-16. RESULTS: 183 family members/partners (mean age = 60.5 years, SD = 13.2; females = 62.8%) of patients (mean age = 64.1, SD = 12.8; females = 46.4%) with 12 haematological conditions completed the FROM-16. The FROM-16 mean total score was 14.0 (SD = 7.2), meaning 'a moderate effect on QoL'. The mean FROM-16 scores of family members of people with multiple myeloma (mean = 15.8, SD = 6.3, n = 99) and other haematological malignancies (mean = 13.9, SD = 7.8, n = 29) were higher than of people with pernicious anaemia (mean = 10.7, SD = 7.5, n = 47) and other non-malignant conditions (mean = 11, SD = 7.4, n = 56, p < .01). Over one third (36.1%, n = 183) of family members experienced a 'very large effect' (FROM-16 score>16) on their quality of life. CONCLUSIONS: Haematological conditions, in particular those of malignant type, impact the QoL of family members/partners of patients. Healthcare professionals can now, using FROM-16, identify those most affected and should consider how to provide appropriate holistic support within routine practice.

Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature.

BACKGROUND: A person's chronic health condition or disability can have a huge impact on the quality of life (QoL) of the whole family, but this important impact is often ignored. This literature review aims to understand the impact of patients' disease on family members across all medical specialities, and appraise existing generic and disease-specific family quality of life (QoL) measures. METHODS: The databases Medline, EMBASE, CINHAL, ASSIA, PsycINFO and Scopus were searched for original articles in English measuring the impact of health conditions on patients' family members/partner using a valid instrument. RESULTS: Of 114 articles screened, 86 met the inclusion criteria. They explored the impact of a relative's disease on 14,661 family members, mostly 'parents' or 'mothers', using 50 different instruments across 18 specialities including neurology, oncology and dermatology, in 33 countries including the USA, China and Australia. These studies revealed a huge impact of patients' illness on family members. An appraisal of family QoL instruments identified 48 instruments, 42 disease/speciality specific and six generic measures. Five of the six generics are aimed at carers of children, people with disability or restricted to chronic disease. The only generic instrument that measures the impact of any condition on family members across all specialities is the Family Reported Outcome Measure (FROM-16). Although most instruments demonstrated good reliability and validity, only 11 reported responsiveness and only one reported the minimal clinically important difference. CONCLUSIONS: Family members' QoL is greatly impacted by a relative's condition. To support family members, there is a need for a generic tool that offers flexibility and brevity for use in clinical settings across all areas of medicine. FROM-16 could be the tool of choice, provided its robustness is demonstrated with further validation of its psychometric properties.

Quality of life measurement in occupational skin diseases. Position paper of the European Academy of Dermatology and Venereology Task Forces on Quality of Life and Patient Oriented Outcomes and Occupational Skin Disease.

The European Academy of Dermatology and Venereology (EADV) has started the 'Healthy Skin @ Work' campaign aimed to raise awareness among the public and EU authorities on the frequency and impact of occupational skin diseases (OSDs). The EADV Task Forces (TFs) on Quality of Life and Patient Oriented Outcomes (QoL/PO) and on OSD present their mutual position statement on QoL assessment in OSDs. The EADV TFs recommend the use of the DLQI as a dermatology-specific instrument and SF-36 as a generic instrument in health-related (HR) QoL studies on OSDs. The OSD-specific questionnaire, LIOD, is not recommended for general use in its present form because of its three months recall period. The EADV TFs discourage the use of non-validated and of non-validated modifications of previously validated HRQoL instruments. The EADV TFs wish to encourage research into: the HRQoL impact of OSDs other than occupational contact dermatitis and hand eczema; comparisons between the effects of different treatments and other interventions on HRQoL in OSDs; and into the HRQoL impairment of patients with OSDs from different countries, and with different provoking factors, to predict if the results of successful therapeutic and educational interventions may be generalized across countries and between occupations.

Quality of life improvement in older patients with heart failure initiated on ivabradine: Results from the UK multi-centre LIVE:LIFE prospective cohort study.

AIMS: LIVE:LIFE is a multi-centre, open-label, prospective observational cohort study assessing health-related quality of life (HRQoL) in older patients with chronic heart failure (CHF) following initiation of ivabradine. The primary endpoint is change in Minnesota Living with Heart Failure Questionnaire (MLWHFQ) total score after 6months. METHODS AND RESULTS: Consenting patients aged ≥70years with CHF, in whom ivabradine was initiated within its licensed indication, were enrolled. Demographic, clinical and HRQoL (MLWHFQ, SF-12) data were collected at baseline (V1), 2 (V2) and 6months (V3). Over 14months, 240 patients were recruited from 44 UK centres. Ninety-nine (41%) were female and 28% aged ≥80years. Aetiology was ischaemic in 152 (63%) and 59% had been diagnosed with CHF for ≤2yrs. 52% of patients were New York Heart Association (NYHA) Class III and 57% had left ventricular ejection fraction <35%. 57% received beta-blockers. Patients had multiple comorbidities (144 (60%) hypertension, 105 (44%) asthma/COPD, 80 (33%) diabetes) and were prescribed a mean of 9±3 daily medications. Resting heart rate was 83bpm at baseline and fell 13bpm by V3. In patients completing both visits (n=187), comparing V3 to baseline: MLWHFQ total score improved by 9 points (p<0.0001, 95% CI: 7-12); 30% of patients improved ≥1 NYHA class and global assessment improved from patient (59%) and physician (60%) perspectives. 88% of patients completing V3 were still taking ivabradine. CONCLUSIONS: These contemporary prospective UK data demonstrate improvements in HRQoL and functional status with ivabradine therapy in typical older CHF patients. Despite comorbidities and polypharmacy, ivabradine was well tolerated.

The burden of common skin diseases assessed with the EQ5D™: a European multicentre study in 13 countries.

BACKGROUND: Generic instruments measuring health-related quality of life (HRQoL), like EQ5D™, enable comparison of skin diseases with healthy populations and nondermatological medical conditions, as well as calculation of utility data. OBJECTIVES: To measure HRQoL in patients with common skin diseases and healthy controls across Europe using the EQ5D. METHODS: This multicentre observational cross-sectional study was conducted in 13 European countries. Each dermatology clinic recruited at least 250 consecutive adult outpatients to complete questionnaires, including the EQ5D. RESULTS: There were 5369 participants (4010 patients and 1359 controls). Mean ± SD self-rated health state reported by patients was 69·9 ± 19·7; for controls it was 82·2 ± 15·5. When adjusted for confounding factors, including comorbidity, mean patient EQ visual analogue scores were 10·5 points lower than for controls (standardized ß = -0·23). Odds ratio with 95% confidence interval for impairment in all five dimensions of EQ5D adjusted for confounders was doubled for patients compared with controls. Patients with hidradenitis suppurativa (HS), blistering conditions, leg ulcers, psoriasis and eczemas had the highest risk for reduction in HRQoL in most dimensions (2-10-fold). Data on differences of impairment by dimensions offer new insights. CONCLUSIONS: This study confirms the large impact skin conditions have on patients' well-being, differentiating between aspects of HRQoL. Patients with HS, blistering diseases, leg ulcers, infections and most chronic skin diseases reported reduced HRQoL compared with patients with chronic obstructive lung disease, diabetes mellitus, cardiovascular disease and cancers. These findings are important in the prioritization of resource allocation between medical fields and within dermatological subspecialities.

The feasibility, reliability and validity of the Malay McGill Quality of Life Questionnaire--Cardiff Short Form (MMQOL-CSF) in Malaysian advanced cancer population.

Health-related quality of life (HRQoL) assessment is important in healthcare outcomes. This study aimed to determine the feasibility, reliability and validity of the Malay McGill Quality of Life Questionnaire--Cardiff Short Form (MMQOL-CSF) in advanced cancer population. Patients either completed the MMQOL-CSF alone or in addition to its long version. The study recruited 116 participants (average age = 44 years old). On average, MMQOL-CSF was completed in 5.4 minutes. Most domains showed evidence of reliability (Cronbach's alpha = 0.76-0.92). Correlation with its long version was moderate to strong (r(s) = 0.54-0.87). The MMQOL-CSF was a feasible, reliable and valid HRQoL instrument in this population.

Khat chewing is a risk factor for acute myocardial infarction: a case-control study.

AIM: Khat chewing is a common habit in Yemen and east African countries. Millions of people chew khat leaves daily for its euphoric and energetic effects and to increase alertness. Cathinone, the main active substance in fresh khat leaves, has sympathomimetic effects which increase heart rate and blood pressure. The aim was to examine the hypothesis that khat chewing is a risk factor for acute myocardial infarction (AMI) using a hospital-based matched case-control study. METHOD: Between 1997 and 1999, we selected 100 patients admitted to the Al-Thawra teaching hospital Sana'a ICU, Yemen with acute myocardial infarction. 100 control subjects, matched to cases for sex and age, were recruited from the outpatients clinics of the same hospital. A questionnaire was completed for case and control groups covering personal history of khat chewing, smoking, hypertension, diabetes and any family history of myocardial infarction. A blood sample was collected for performing lipid profiles. Cases and controls were compared by analysis conducted using conditional logistic regression which corrected for baseline imbalances leading to less biased estimations of odds ratio (OR). The risk associated with each classical factor and khat chewing habits was then investigated. OR values greater than 2.5 indicated a significant risk factor. RESULTS: Khat chewing was significantly higher among the AMI case group than control group (OR = 5.0, 95% CI 1.9-13.1). A dose-response relationship was observed, the heavy khat chewers having a 39-fold increased risk of AMI. CONCLUSION: This study indicates that khat chewing is associated with AMI and is an independent dose-related risk factor for the development of myocardial infarction.

The applicability of quality-of-life assessment in palliative care: comparing two quality-of-life measures.

Two self-administered quality-of-life measures, the McGill Quality of Life Questionnaire (MQOL) and the Patient Evaluated Problem Scores (PEPS) were compared in patients receiving palliative care. The MQOL is a multidimensional questionnaire consisting of 16 items in five quality-of-life (QOL) domains: physical symptoms, physical well-being, psychological, existential and support domains. The PEPS is an individualized questionnaire asking patients to identify and rate major problems affecting their QOL. Both questionnaires were completed by 36 patients during outpatient clinic visits in three palliative care settings in Wales. Of those patients who stated their questionnaire preference 60% favoured MQOL due to its comprehensiveness, while others (28%) preferred PEPS due to its simplicity. The MQOL showed excellent internal consistency (alpha = 0.90). The intrapatient analysis of answers from both questionnaires showed that MQOL was better than PEPS in reporting physical symptoms and support domain, while PEPS detected more psychosocial issues. The MQOL overall QOL score correlated highly with its existential domain (rs = 0.57, P < 0.0005) and the PEPS overall quality of life (rs = 0.77, P < 0.0005). Similarly, the PEPS overall QOL correlated well with MQOL total score (rs = 0.76, P < 0.0005) and existential domain of the MQOL (rs = 0.63, P < 0.0005). The findings support the importance of an existential domain in assessing the QOL of this population. Both MQOL and PEPS were found to be relevant and acceptable in advanced cancer patients receiving palliative care. However, with its favourable psychometric properties MQOL may be more suitable for QOL assessment in this population.

The attitude of health care professionals toward the availability of hospice services for cancer patients and their carers in Saudi Arabia.

The main objectives of this study were to assess cancer care and the need for establishing hospice/palliative care for cancer patients and their carers in Saudi Arabia. Six-hundred-and-ninety-five participants (136 cancer patients, 161 informal carers, and 398 health care professionals) were recruited from oncology centres in four major regions of Saudi Arabia. Each group was asked to complete a questionnaire specifically designed to meet the aims of the study. The data obtained from the three different questionnaires indicated that the level of cancer care in the Ministry of Health hospitals was poor compared to other hospitals such as the King Faisal Specialist Hospital and Research Centre, military hospitals or university hospitals in the kingdom, perhaps due to the absence of home care services or periodic follow-up by their regional hospitals. It was also reported that the shortage of drugs used in cancer management, the severe restriction of prescribing narcotic analgesics and lack of cancer care knowledge were the major impediments to providing good cancer care. Thus, the strong inter-relationship among Saudi families, the present poor status of cancer care, cancer patients' and their carers' acceptability of hospice services and of the willingness of health care professionals to receive training in palliative care, illustrate the need for initiating the provision of palliative care services in the Saudi health system.

Basal cell carcinomas cause little handicap.

Basal cell carcinoma (BCC) is the most common type of skin cancer and the incidence of BCC is expected to rise, with increased demand on dermatology resources. Little is known of the effect on people's lives of having skin cancer. The aim of this study was to quantify the handicap caused gy basal cell carcinomas before and after therapy. Forty-four patients (22 males, mean age = 65 yrs, range = 35-81 yrs) with 48 BCCs were recruited and 37 patients completed the study. Each patient completed the UK Sickness Impact Profile (UKSIP) and the Dermatology Life Quality Index (DLQI) at the initial visit to the dermatology clinic, 1 week after treatment and 3 months after treatment. Lesions had been present for a mean of 25 months (range = 1-240 months), their mean diameter was 9.6mm (range = 3-35mm) and the sites were head and neck (79%), trunk (17%) and limbs (4%). There was no relationship between the quality of life score and size of lesion. Overall the scores at presentation were very low, rising 1 week after treatment and falling to below the initial scores at 3 months (mean UKSIP 0.4%, 0.7%, 0.13%; mean DLQI 5.3% 8.7%, 1.2%). BCCs cause little handicap. This may explain the delay in seeking medical attention and should be considered in planning public health education about BCCs.