13 th EAPC World Congress Palliative Care the right way forward Prague, May 30 June 2, 2013 Elderly patients with advanced frailty in the community: a qualitative study on their needs and experiences Gabriele Müller-Mundt, Jutta Bleidorn, Karin Geiger, Katharina Klindtworth, Sabine Pleschberger, Eva Hummers-Pradier, Nils Schneider Institute for Epidemiology, Social Medicine and Health Systems Research and Institute for General Practice, Hannover Medical School, Hannover, Germany
Research Project ELFOP End of life care for frail older patients in family practice a qualitative longitudinal study on needs, appropriateness and utilisation of services Institution Principal investigator 1 Institute for Epidemiology, Social Medicine and Health Systems Research, 2 Institute for General Practice, Hannover Medical School, Hannover, Germany Prof. Dr. Nils Schneider 1,2, Dr. Jutta Bleidorn 2 Researchteam Dr. Karin Geiger 2, Katharina Klindtworth 1, Dr. Gabriele Müller-Mundt 1 Co-Applicants/ Project partner Prof. Dr. Eva Hummers-Pradier, Department of General Practice, University Medical Centre Göttingen, Göttingen, Germany Prof. Dr. Sabine Pleschberger (methodological supervision), Institute of Nursing and Care Sciences Research, Dep. of Nursing Science and Gerontology, The Health and Life Sciences University (UMIT), Vienna, Austria Duration 36 month (February 2012 to January 2015) Funding German Federal Ministry of Education and Research (Grant-No.: 01 GY 1120) Ethical approval Ethics Committee of Hannover Medical School (AZ: 1378 2012)
Frailty Definition Frailtyis a biologic syndrome of decreased reserve and resistance to stressors, resulting from cumulative declines across multiple physiologic systems and causing vulnerability to adverse out-comes. (Fried et al. 2001, p.m146) partly overlapping with disability and multi-morbidity associated with higher risk(s) of falls hospitalization admission to long-term care facilities death Fried et al. (2001): Frailty in older adults. J Gerontol A Biol Sci Med Sci, 56 (3) (2001), pp. M146 M156
Frailty as a Phenotype (Fried et al. 2001) Shrinking (unintentional weight loss, sarcopenia) Weakness (reduced grip strength) Exhaustion (poor endurance) Slowness (slow walk speed) Low physical activity Occurrence of 1 or 2 dimensions = pre-frail, 3 dimensions = frail Fried et al. (2001): Frailty in older adults: evidence for a phenotype. J Gerontol A Biol Sci Med Sci, 56 (3) (2001), pp. M146 M156 See also Frailty Index SHARE FI developed and validated on the basis of the Survey of Health, Ageing and Retirement in Europe (Santos-Eggimann et al. 2009, Romero-Ortuno et al. 2010, Romero-Ortuno 2011)
Frailty in Community-Dwelling Europeans Aged 50+ Results of the Survey of Health, Ageing and Retirement in Europe (SHARE) (first wave 2004, n=16.584 community dwelling people aged 50+) Age group Frailty according to SHARE FI pre-frail frail Middle aged (50 to 64 years) 37.4% 4.1% female 42.0% 5.2% male 32.7% 2.9% Older people (65 years and older) 42.3% 17.0% female 42.7% 21.0% male 41.9% 11.9% Santos-Eggimann et al. (2009): Frailty in Middle-Aged and Older Community-Dwelling Europeans Living in 10 Countries. J Gerontol A Biol Sci Med Sci. 2009 June; 64A/6, pp. 675 681
ELFOP Study aims Patient interviews (main part) Explore and understand community dwelling older patients needs and experiences of becoming/being frail perception and utilisation of available services with special attention to appropriateness and access Contribute to the development of services according to the patients needs with special attention to general palliative care needs Main research question What do frail older patients perceive as their main clinical, psycho-social and information needs towards the end of life?
Patient recruitment and sampling Recruitment via general practitioners (1 to max. 3 patients per GP) Setting: urban and rural areas in Lower Saxony/North Germany Inclusion criteria moderate to severe frailty (stage 6 / 7 according to CSHA - Clinical Frailty Scale) and being frail according to SHARE FI age 70 years ability to give informed consent Exclusion criteria severe dementia, active progressive disease (i.e. cancer). Purposive sampling: stratified by gender and a variety of life situations and care arrangements
Data base ELFOP Project exploring the patients views 30 qualitative interviews with 31 frail elderly patients* manual guided with narrative impulse consecutively conducted (May to December 2012) at the patients home ( = t 0 of the main study part) audiotaped and transcribed in verbatim with the patients permission (signed informed consent) postscripts and interview memos * among them two frail couples, one tandem-interview
Interview guide main themes Health (problems), illness/frailty experience Challenges and coming to terms with health problems / impairment(s) in daily life Support needs Perceived informal and professional support (Social) Participation Future prospects, concerns, and wishes Biographical and social background SHARE FI Questionnaire and grip strength measurement
ELFOP Patient sample Socio-demographic characteristics and support (needs) Total number (n=31) Gender female 19 (61%) Age groups 70 to 79 years 10 (32%) 80 to 89 years 16 (52%) 90 years and older 5 (16%) Marital status married 16 (52%) single/ divorced 2 ( 6%) widowed 13 (42%) Living situation living with their spouse/family 19 (61%) Frailty moderate (6 / CSHA Clinical Frailty Scale) 28 (90%) severe (7 / CSHA Clinical Frailty Scale) 3 (10%) Mobility walker-rollator and/or wheel chair 28 (90%) Long term care benefits (German nursing insurance care level 1 23 (74%) Informal Support partner / family member(s) 28 (90%) neighbour next door 5 (16%) Professional support home care nursing service 20 (65%)
Results: Frailty challenges from the patients view Being frail as an exhaustion of capabilities and losses (in older age) declining physical strength / vigour declining mental / cognitive strength increasing symptom burden social losses and bereavement increasing physical, psycho-social and spiritual support needs She (housekeeper) is here since last year. I used to do it all by my self, at times with some support of my daughter. It s my tiredness and unsteady walk, you know. (FP-26 t 0 ) It s the breath [ ] Now my feet are aching, too. I hardly can walk. [ ] If I could walk I could go out to the theatre. (FP-09 t 0 ) There is nearly no one any more, they (friends) are almost all gone. (FP-22 t 0 ) My one daughter died last years. I can t come over it! (FP-25 t 0 )
(First) Conclusions The results of analysis of the baseline interviews indicate that frail elderly patients need sustainable informal and formal support to keep on living in their homes further integrating the palliative care approach into general care seems necessary to meet their needs a knowing and caring family doctor they trust seems to play a vital role for the patients and their families The prospective design of the ongoing study covers up to three additional follow-up interviews every six months serves to gain a deeper understanding of the dynamic experience of advanced frailty, and how patients needs vary over time if frailty progresses
Contact: Dr. Gabriele Müller-Mundt Hannover Medical School Institute for General Practice (OE 5440) Carl-Neuberg-Straße 1 D-30625 Hannover, Germany Tel.: +(49) 511 532 8091 Email: mueller-mundt.gabriele@mh-hannover.de
Appendix Frailty Decline in health and independency: CSHA Clinical Frailty Scale (Rockwood et al. 2005) ELFOP Project: Study design and time flow ELFOP Project Design and methods (main study part)
Frailty Decline in health and independency Canadian Study of Health and Aging (CSHA) Clinical Frailty Scale (Rockwood et al. 2005) 1 Very fit Robust,active, energetic, well motivated and fit these people commonly exercise regularly and are in the most fit group for their age 2 Well Without active disease, but less fit than people in category 1 3 Well, with treated comorbid disease Disease symptoms are well controlled compared with those in category 4 4 Apparently vulnerable Although not frankly dependent, these people commonly complain of being slowed up or have disease symptoms 5 Mildly frail With limited dependence on others for instrumental activities of daily living 6 Moderately frail Help is needed with both instrumental and non-instrumental activities of daily living 7 Severely frail Completely dependent on others for the activities of daily living, or terminally ill. Rockwood K, Song X, MacKnight C, Bergman H, Hogan DB, McDowell I, Mitnitski A: A global clinical measure of fitness and frailty in elderly people. CMAJ 2005, 173, pp.489 495.
ELFOP Project: Study design and time flow Study design and time flow Year 1 Year 2 Year 3 Phase 1 Phase 2 Phase 3 Preparation and field access Longitudinal qualitative patient-centred case studies Focus groups (FG) Expert workshop Serial interviews with frail older patients (n=30), their informal caregivers and family physicians (six-monthly) Five focus groups with health professionals Health care experts Baseline interviews (t 0 ) Follow-up interviews (t 1 ) Follow-up interviews (t 2 ) Follow-up interviews (t 3 ) FG1 FG2 FG3 FG4 FG5 Analysis serial interviews Analysis focus groups Analysis workshop Month 3 6 9 12 15 18 21 24 27 30 33 36 Müller-Mundt G, Bleidorn J, Geiger K, Klindtworth K, Pleschberger S, Hummers-Pradier E, Schneiderr N (2013): End of life care for frail older patients in family practice (ELFOP) protocol of a longitudinal qualitative study on needs, appropriateness and utilisation of services. BMC Family Practice 14:52 doi:10.1186/1471-2296-14-52
ELFOP Project Design and methods (main study part) Prospective qualitative longitudinal design Patient-centred case studies from multiple perspectives: the patients view their main informal carers view their main professional carers / GPs view case studies (n=31) based on up to four serial interviews with each participant (six-monthly within 18 month)