Meaning in Life in Patients With Progressive Supranuclear Palsy

Fegg, Martin; Kögler, Monika; Abright, C.; Hensler, Mira; Lorenzl, Stefan

doi:10.1177/1049909113492411

Cited by 11 publications

(7 citation statements)

References 32 publications

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“…The high levels reported in the SMILE total scores in both populations (> 80) are comparable with those found in other studies including different kind of populations: cancer patients (25,26), palliative care patients (27,28), and general populations (22,29). In all these studies, scores ranged between 70 and 80.…”

Section: Level Of Satisfaction In Mil: the Meaning-making Hypothesissupporting

confidence: 87%

Meaning in life and quality of life: comparison between palliative care patients and a representative sample of the Swiss population

Bernard¹,

Berchtold

Strasser

et al. 2019

Preprint

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Background and objectives Existential areas, and in particular the concept of meaning in life, represent a key topic in palliative care. The aims of this study are to explore (i) the differences in perceived meaning in life (MIL) and in the meaning-relevant life areas between a representative sample of the Swiss population and palliative care patients, and (ii) to what extent MIL can be considered as a significant predictor of quality of life (QOL) in the two populations. Methods A cross sectional study was conducted separately for the patients (face-to-face interviews) and the representative sample of the Swiss population (telephone survey). MIL was measured with the Schedule for Meaning in Life Evaluation (SMILE) and QOL with a with a single item visual analogue scale (0-10). Socio-demographic variables were controlled for in the analyses. Results 206 palliative care patients and 1015 participants from the Swiss population completed the protocol. Results indicated high MIL scores in both population even if the difference was significant (patients 81.9 vs general population 87, p<.001). Compared to the Swiss population, patients were more likely to cite “family” (OR=1.78), “social relations” (OR=1.9), “spirituality and religion” (OR=3.93), “social commitment” (OR=1.94), and “growth” (OR=2.07), and less likely to cite “finances” (OR=0.15) and “health” (OR=0.21) as MIL-relevant areas. The SMILE scores and MIL areas explained 21.8% of the QOL variance for the palliative care patients and 15.1% for the representative sample. Conclusions Our data emphasize the importance of MIL as a contributor to QOL in both clinical and non-clinical settings. From a clinical perspective, it highlights the importance of the life areas contributing to MIL, in particular the social interactions, since they play a significant role for the patients’ QOL.

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Section: Level Of Satisfaction In Mil: the Meaning-making Hypothesissupporting

confidence: 87%

Meaning in life and quality of life: comparison between palliative care patients and a representative sample of the Swiss population

Bernard¹,

Berchtold

Strasser

et al. 2019

Preprint

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show abstract

“…We found that both “meaning” and “peace” subscores of the FACIT‐sp scale contributed to HRQOL, and these represent two important issues for people with PD. There is a growing body of literature on the importance of meaning in coping with chronic illnesses, and a loss of meaning may contribute to demoralization and even requests for medical aid in dying . Regarding peace, there is evidence that prayer, meditation, deep‐breathing, and other spiritual practices may be useful aids to coping and are commonly used by PD patients .…”

Section: Discussionmentioning

confidence: 99%

Defining Palliative Care Needs in Parkinson's Disease

Kluger

Shattuck

Berk

et al. 2018

Movement Disord Clin Pract

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ObjectivesObjectives: Palliative care addresses the suffering of patients and families affected by progressive illness through the management of medical symptoms, psychosocial issues, and spiritual concerns. Although there is an emerging interest in applying palliative care to Parkinson's disease (PD), potential palliative care needs have not been systematically investigated in PD patients. Our primary objective was to determine the prevalence of clinically significant symptomatic, psychosocial, and spiritual issues in PD and understand their impact on health-related quality of life (HRQOL). Secondary objectives included comparing the level of palliative care needs of PD patients to advanced cancer patients and assessing preferences for advance care planning. Methods Methods: Ninety PD patients and 47 patients with advanced cancer were surveyed regarding potential palliative care needs, including symptom burden, mood, anticipatory grief, and spiritual well-being. PD patients completed additional scales regarding HRQOL, motor symptoms, cognitive impairment, and preferences regarding advance care planning. ResultsResults: Potential palliative care needs, including high symptom burden and grief, were common in PD patients and contributed to HRQOL even when controlling for depression and motor severity. In all domains investigated, PD patients had similar or higher levels of palliative care needs as patients with advanced cancer. PD patients expressed a desire to complete advance directives early in the disease course and with a physician. Conclusions Conclusions: Palliative care needs contribute to HRQOL in PD and are of similar severity as cancer patients. This study supports and helps focus efforts to integrate palliative care principles in PD care across the spectrum of the disease.Although Parkinson's disease (PD) is traditionally viewed as a movement disorder, our understanding of PD has shifted markedly over the past 20 years. Nonmotor symptoms are now recognized as intrinsic features of PD with a significant impact on quality of life (QOL) and disability. 1-3 There is increasing recognition of the impact of PD on mortality, with recent Centers for Disease Control and Prevention statistics ranking PD as the 14th leading cause of death. 4 Palliative care (PC) is an approach to improving the QOL of patients and families focused on the relief of suffering through the management of physical, psychosocial, and spiritual issues. 5 Although traditionally associated with cancer, PC has been successfully applied to several chronic illnesses, including heart failure and pulmonary disease. 6,7 There is an emerging interest in applying PC to neurological illnesses, including PD. 8 A fundamental first step in moving this field forward is to systematically identify and define the PC needs of PD patients. Our primary objective was thus to understand the range of symptomatic, psychosocial, and spiritual issues in PD and understand how they impact QOL. Secondary objectives included comparing the severity and distribution of PC...

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“…Cohen et al [ 7 ] highlighted that the existential wellbeing was at least as important as any other domain in predicting the overall perceived QOL for palliative patients. Numerous studies have shown that QOL at the end of life is closely linked to non-physical determinants [ 3 , 6 , 41 – 43 ]. In reviews focusing on the QOL domains that are important for incurably ill patients, Albers et al showed that spiritual/existential well-being was one of the most often cited domains [ 1 , 44 ].…”

Section: Discussionmentioning

confidence: 99%

Meaning in life and perceived quality of life in Switzerland: results of a representative survey in the German, French and Italian regions

Bernard

Braunschweig

Fegg

et al. 2015

Health Qual Life Outcomes

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BackgroundThe concept of meaning in life (MIL) has become a central one in recent years, particularly in psycho-oncology and palliative care. The Schedule for Meaning in Life Evaluation (SMILE) has been developed to allow individuals to choose the life areas that they consider to be important for their own MIL. This approach relates to the “World Health Organisation” definition of quality of life (QOL) as an individual’s perception of his own position. The aims of this study were (i) to assess MIL in a representative sample of the Swiss population according to the three linguistic regions and (ii) to evaluate whether MIL constitutes a significant determinant of the perceived QOL.MethodsA telephone survey of the Swiss population, performed by a professional survey company, was conducted between November and December 2013. The interview included the SMILE, perceived QOL (0–10) and health status (1–5), and various sociodemographic variables. In the SMILE, an index of weighting (IOW, 20–100), an index of satisfaction (IOS, 0–100), and a total SMILE index (IOWS, 0–100) are calculated from the areas mentioned by the participants as providing MIL.ResultsAmong the 6671 telephonic contacts realized, 1015 (15 %) participants completed the survey: 405 French, 400 German and 210 Italian participants. “Family” (80.2 %), “occupation/work” (51 %), and “social relations” (43.3 %) were the most cited MIL-relevant categories. Italian participants listed “health” more frequently than German and French participants (50.4 % vs 31.5 % and 24.8 % respectively, χ2 = 12.229, p = .002). Age, gender, education, employment, and marital status significantly influenced either the MIL scores or the MIL-relevant categories. Linear regression analyses indicate that 24.3 % of the QOL variance (p = .000) is explained by health status (B = .609, IC = .490-.728, p = .000), MIL (B = .034, IC = .028-.041, p = .000) and socioeconomic status (F = 11.01, p = .000).ConclusionThe major finding of our analysis highlights the positive and significant influence of MIL on the perceived QOL in a representative sample of a general, multilingual and multicultural population. This result indicates that the existential dimension is not only determinant for QOL in some critical life events, as shown e.g. in psycho-oncology and palliative care, but also in everyday life.

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Meaning in Life in Patients With Progressive Supranuclear Palsy

Cited by 11 publications

References 32 publications

Meaning in life and quality of life: comparison between palliative care patients and a representative sample of the Swiss population

Meaning in life and quality of life: comparison between palliative care patients and a representative sample of the Swiss population

Defining Palliative Care Needs in Parkinson's Disease

Meaning in life and perceived quality of life in Switzerland: results of a representative survey in the German, French and Italian regions

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