Quality of life and care needs in women with estrogen positive metastatic breast cancer: a qualitative study.

BACKGROUND: In recent years, the prognosis of metastatic breast cancer (MBC) has improved with more effective therapies applicable to a wider range of patients. To many patients, a MBC diagnosis thus initiates a prolonged course of illness and treatment. This qualitative study aimed to explore the long-term health-related quality of life (HRQoL) and support needs in MBC patients of all ages in the Danish context. MATERIAL AND METHODS: Eighteen MBC patients participated in five qualitative focus group interviews that were analyzed using content analysis and a constructivist approach. RESULTS: The participants described how MBC severely reduced their physical and psychosocial functioning and required a constant adaptation of their quality of life (QoL) standards in relation to their changing life situation and disease progression. Overall, they felt medically well-treated but lacked a multidisciplinary approach to care including psychological support, in particular, but also manual physiotherapy, health care coordination and social counseling. The participants called for continuity of care with the same health care professionals as this facilitated communication and flexibility in planning treatment and controls. They requested a reduction of precious time spend on treatment to enable them to focus on their most meaningful relations and activities. CONCLUSION: With the MBC diagnosis, the focus of treatment switches from disease eradication to prolonging survival, alleviating symptoms and improving QoL. To patients, MBC marks a shift in expectations from quantity to quality of life and a perpetual adaptation of their QoL standards. To sustain patients' HRQoL, it is important that along with improvements in life-prolonging treatment, comprehensive care also supports their main psycho-social needs. These patients needed support in maintaining normality and role functioning enabling them to focus on living, not merely surviving, through this prolonged disease phase.

Familial hypercholesterolaemia reduces the quality of life of patients not reaching treatment targets.

INTRODUCTION: Familial hypercholesterolaemia (FH) is the most common monogenic disorder associated with premature cardiovascular disease. If untreated, life expectancy in heterozygous FH patients is shortened by 20-30 years compared with the general population. Nevertheless, treatment goals are only met in approximately 50% of patients. This comparative study examined the quality of life (QoL) impact of FH in patients who had and had not reached the target of treatment. METHODS: Two qualitative focus group interviews were carried out with a total of ten FH patients. A semi-structured interview guide included questions identified in a preceding literature study. The data were analysed using a medical anthropological approach. RESULTS: While having FH did not have much impact on well-treated patients' QoL, patients who had not reached the treatment target had markedly more concerns. They had experienced severe side-effects and worried about their own and their relatives' health. They were concerned about the long-term impact of not being effectively treated including the risk that coronary heart disease could cause their premature death or disability and inability to care for their children, in particular. The women had issues with stigma and self-efficacy. CONCLUSIONS: The QoL impact of FH is related to treatment efficacy. These findings need to be addressed in the management of FH patients. Particular attention should be paid to those who are not presently reaching the target of treatment. FUNDING: The study was funded by a research grant from Amgen. TRIAL REGISTRATION: not relevant.