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.

Quality of Life, Burden of Disease, Co-morbidities, and Systemic Effects in Vitiligo Patients.

Vitiligo is a complex, systemic disease associated with many autoimmune and autoinflammatory conditions. Additionally, the cutaneous changes of vitiligo have significant effects on quality of life and self-esteem. Further efforts are needed to increase our understanding of vitiligo comorbidities as well as to increase awareness of the psychological effects of vitiligo.

Prevalence and incidence of pernicious anemia. An evaluation for gastric screening.

To evaluate the feasibility of gastroscopic screening for gastric malignancy in patients with pernicious anemia, all individuals treated with vitamin B12 in a well-defined population were identified. Individuals treated for an uncertain diagnosis were submitted to supplementary examinations. Of all individuals treated with vitamin B12 41% had unequivocal pernicious anemia, 13% possible pernicious anemia, 26% vitamin B12 malabsorption other than pernicious anemia, and 20% no verified vitamin B12 deficiency. The maximum crude prevalence of pernicious anemia was 1.98 per mile and the crude maximum incidence 16.7 x 10(-5) x year-1. The estimated annual cost of endoscopic gastric screening at 3-year intervals in patients with pernicious anemia younger than 75 years of age would be SEK 15,000/100,000 inhabitants, a cost that to a great extent could be financed by a more adequate prescription of vitamin B12 treatment.