Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 2014; 15: 163–164
EDITORIAL
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Downloaded from informahealthcare.com by University of Ulster at Jordanstown on 02/08/15 For personal use only.
Loss and well-being in ALS: A different perspective on the challenge
ZACHARY SIMMONS Department of Neurology, Penn State Hershey Medical Center, Hershey, Pennsylvania, USA
The Editorial by G. Foley (1) is important and thought-provoking. As she notes, her qualitative research suggests that “loss for people with ALS…included physical and existential loss” and “…unremitting physical loss can engender unremitting loss in existential domains”. This leads her to conclude that it is possible that people with ALS may not maintain ‘well-being’ in the face of such loss, that health care providers may not be able to help such individuals sustain factors that are important to their well-being, and that enabling those with ALS to have control over their care may facilitate patients’ wellbeing (1,2). It is not clear to me that this necessarily challenges current concepts as much as it improves our understanding of them and facilitates a broader approach to care of patients with ALS. This difference in perspective may arise because the construct of well-being is not necessarily the same as that of quality of life (QoL), because losses in specific domains, including the existential, do not necessarily result in lower overall QoL as perceived by the patient, and because of the breadth of the concept of QoL. QoL is a complex construct, composed of a number of health-related contributors such as physical, psychological, and existential factors, as well as non-health-related items such as family, friends, and jobs (3,4). QoL, as measured by the Schedule for Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), the ALS Specific Quality of Life Instrument (ALSSQoL), the McGill QoL instrument (MQoL), or a singleitem score (MQoL-SIS) is independent of strength and physical function in patients with ALS, and is well-maintained, on average despite physical losses over time (5–8). Thus, even if physical and existential losses are occurring, other factors may be improving to sustain overall QoL. It is also more difficult to quantitate existential loss than physical
loss, and it may be that existential loss is not as severe as physical loss when the population of ALS patients is assessed globally. Health care providers must also consider individual encounters as distinct from overall ALS group trends; although existential losses may occur in individuals (2), they are not necessarily universal, and other measures of QoL will change over time, resulting in an individual profile of overall QoL and its domains in each patient. Thus, some patients with ALS will experience a decline in self-rated QoL and in various domains, but others will experience improvements. On average, those with ALS must demonstrate maintenance of, or improvement in, existential or other non-physical factors that contribute to QoL, or else QoL would inevitably decline, on average, in groups of ALS patients. As noted previously, this is not the case. Foley et al. also note the importance of age and life stage and the role of family (9). This is entirely consistent with the finding that support from family and friends sustains QoL in individuals with ALS (5,7). So, what can we, as ALS health care providers and investigators, conclude? The important work of Foley et al. emphasizes that we must take care to assess each patient individually not only for their physical losses, but for the other losses they suffer, including existential ones. Our understanding of how to best care for those with ALS is strengthened by augmenting our knowledge of QoL with an understanding of loss, age/life stage, and control. Ultimately, it is our responsibility to individualize our patient assessments so as to understand physical, existential, psychological, life stage, and family/ support factors. We may best facilitate positive coping mechanisms and alter dysfunctional ones in our patients by so doing. We have called for further study of psychological interventions to facilitate QoL in individuals with ALS (10). Although control is not a psychological intervention per se, there
Correspondence: Z. Simmons, Penn State Hershey Medical Center, Department of Neurology, EC 037, 30 Hope Drive, Hershey, PA 17033, USA. Fax: 717 531 0384. E-mail: [email protected] ISSN 2167-8421 print/ISSN 2167-9223 online © 2014 Informa Healthcare DOI: 10.3109/21678421.2014.902069
164
Z. Simmons
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Downloaded from informahealthcare.com by University of Ulster at Jordanstown on 02/08/15 For personal use only.
are psychological interventions, such as mindfulness therapy, which offer patients greater control. Well informed and skilled health care providers can help our patients maximize their QoL.
Declaration of interest: The author reports no confl icts of interest. The author alone is responsible for the content and writing of the paper.
References 1. Foley G. Loss and well-being in amyotrophic lateral sclerosis: challenging the consensus. Amyotroph Lateral Scler Frontotemporal Degener. 2014;15:161–2. 2. Foley G, Timonen V, Hardiman O. Exerting control and adapting to loss in amyotrophic lateral sclerosis. Soc Sci Med. 2013;101:1–7. 3. Gill TM, Feinstein AR. A critical appraisal of the quality of quality-of-life measurements. JAMA. 1994;272: 619–26.
4. WHOQoL Group. The World Health Organization quality of life assessment (WHOQoL): development and general psychometric properties. Soc Sci Med. 1998;46:1569–85. 5. Simmons Z, Bremer BA, Robbins RA, Walsh SM, Fischer S. Quality of life in ALS depends on factors other than strength and physical function. Neurology. 2000;55:388–92. 6. Robbins RA, Simmons Z, Bremer BA, Walsh SM, Fischer S. Quality of Life in ALS is maintained as physical function declines. Neurology. 2001;56:442–4. 7. Neudert C, Wasner M, Borasio GD. Individual quality of life is not correlated with health related quality of life or physical function in patients with amyotrophic lateral sclerosis. J Palliat Med. 2004;7:551–7. 8. Felgoise SH, Stewart JL, Bremer BA, Walsh SM, Bromberg MB, Simmons Z. The SEIQoL-DW for assessing quality of life in ALS: strengths and limitations. Amyotroph Lateral Scler. 2009;10:456–62. 9. Foley G, Timonen V, Hardiman O. Acceptance and decision making in amyotrophic lateral sclerosis from a life-course perspective. Qual Health Res published online 13 Dec 2013, DOI: 10.1177/1049732313516545. 10. Pagnini F, Simmons Z, Corbo M, Molinari E. Amyotrophic lateral sclerosis: time for research about psychological intervention? Amyotroph Lateral Scler. 2012;13:416–7.
EDITORIAL
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Downloaded from informahealthcare.com by University of Ulster at Jordanstown on 02/08/15 For personal use only.
Loss and well-being in ALS: A different perspective on the challenge
ZACHARY SIMMONS Department of Neurology, Penn State Hershey Medical Center, Hershey, Pennsylvania, USA
The Editorial by G. Foley (1) is important and thought-provoking. As she notes, her qualitative research suggests that “loss for people with ALS…included physical and existential loss” and “…unremitting physical loss can engender unremitting loss in existential domains”. This leads her to conclude that it is possible that people with ALS may not maintain ‘well-being’ in the face of such loss, that health care providers may not be able to help such individuals sustain factors that are important to their well-being, and that enabling those with ALS to have control over their care may facilitate patients’ wellbeing (1,2). It is not clear to me that this necessarily challenges current concepts as much as it improves our understanding of them and facilitates a broader approach to care of patients with ALS. This difference in perspective may arise because the construct of well-being is not necessarily the same as that of quality of life (QoL), because losses in specific domains, including the existential, do not necessarily result in lower overall QoL as perceived by the patient, and because of the breadth of the concept of QoL. QoL is a complex construct, composed of a number of health-related contributors such as physical, psychological, and existential factors, as well as non-health-related items such as family, friends, and jobs (3,4). QoL, as measured by the Schedule for Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), the ALS Specific Quality of Life Instrument (ALSSQoL), the McGill QoL instrument (MQoL), or a singleitem score (MQoL-SIS) is independent of strength and physical function in patients with ALS, and is well-maintained, on average despite physical losses over time (5–8). Thus, even if physical and existential losses are occurring, other factors may be improving to sustain overall QoL. It is also more difficult to quantitate existential loss than physical
loss, and it may be that existential loss is not as severe as physical loss when the population of ALS patients is assessed globally. Health care providers must also consider individual encounters as distinct from overall ALS group trends; although existential losses may occur in individuals (2), they are not necessarily universal, and other measures of QoL will change over time, resulting in an individual profile of overall QoL and its domains in each patient. Thus, some patients with ALS will experience a decline in self-rated QoL and in various domains, but others will experience improvements. On average, those with ALS must demonstrate maintenance of, or improvement in, existential or other non-physical factors that contribute to QoL, or else QoL would inevitably decline, on average, in groups of ALS patients. As noted previously, this is not the case. Foley et al. also note the importance of age and life stage and the role of family (9). This is entirely consistent with the finding that support from family and friends sustains QoL in individuals with ALS (5,7). So, what can we, as ALS health care providers and investigators, conclude? The important work of Foley et al. emphasizes that we must take care to assess each patient individually not only for their physical losses, but for the other losses they suffer, including existential ones. Our understanding of how to best care for those with ALS is strengthened by augmenting our knowledge of QoL with an understanding of loss, age/life stage, and control. Ultimately, it is our responsibility to individualize our patient assessments so as to understand physical, existential, psychological, life stage, and family/ support factors. We may best facilitate positive coping mechanisms and alter dysfunctional ones in our patients by so doing. We have called for further study of psychological interventions to facilitate QoL in individuals with ALS (10). Although control is not a psychological intervention per se, there
Correspondence: Z. Simmons, Penn State Hershey Medical Center, Department of Neurology, EC 037, 30 Hope Drive, Hershey, PA 17033, USA. Fax: 717 531 0384. E-mail: [email protected] ISSN 2167-8421 print/ISSN 2167-9223 online © 2014 Informa Healthcare DOI: 10.3109/21678421.2014.902069
164
Z. Simmons
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Downloaded from informahealthcare.com by University of Ulster at Jordanstown on 02/08/15 For personal use only.
are psychological interventions, such as mindfulness therapy, which offer patients greater control. Well informed and skilled health care providers can help our patients maximize their QoL.
Declaration of interest: The author reports no confl icts of interest. The author alone is responsible for the content and writing of the paper.
References 1. Foley G. Loss and well-being in amyotrophic lateral sclerosis: challenging the consensus. Amyotroph Lateral Scler Frontotemporal Degener. 2014;15:161–2. 2. Foley G, Timonen V, Hardiman O. Exerting control and adapting to loss in amyotrophic lateral sclerosis. Soc Sci Med. 2013;101:1–7. 3. Gill TM, Feinstein AR. A critical appraisal of the quality of quality-of-life measurements. JAMA. 1994;272: 619–26.
4. WHOQoL Group. The World Health Organization quality of life assessment (WHOQoL): development and general psychometric properties. Soc Sci Med. 1998;46:1569–85. 5. Simmons Z, Bremer BA, Robbins RA, Walsh SM, Fischer S. Quality of life in ALS depends on factors other than strength and physical function. Neurology. 2000;55:388–92. 6. Robbins RA, Simmons Z, Bremer BA, Walsh SM, Fischer S. Quality of Life in ALS is maintained as physical function declines. Neurology. 2001;56:442–4. 7. Neudert C, Wasner M, Borasio GD. Individual quality of life is not correlated with health related quality of life or physical function in patients with amyotrophic lateral sclerosis. J Palliat Med. 2004;7:551–7. 8. Felgoise SH, Stewart JL, Bremer BA, Walsh SM, Bromberg MB, Simmons Z. The SEIQoL-DW for assessing quality of life in ALS: strengths and limitations. Amyotroph Lateral Scler. 2009;10:456–62. 9. Foley G, Timonen V, Hardiman O. Acceptance and decision making in amyotrophic lateral sclerosis from a life-course perspective. Qual Health Res published online 13 Dec 2013, DOI: 10.1177/1049732313516545. 10. Pagnini F, Simmons Z, Corbo M, Molinari E. Amyotrophic lateral sclerosis: time for research about psychological intervention? Amyotroph Lateral Scler. 2012;13:416–7.
