A new measure of home care patients' dignity at the end of life: The Palliative Patients' Dignity Scale (PPDS)

Abstract

The new PPDS has appropriate psychometric properties that, together with its briefness, encourages its applicability for dignity assessment at the end of life.

Palliative care in primary health care: scoping review

“…In the research, a total of 154 studies were found, publications (9)(10)(11)(12)(13)(14)(15)(16)(17)(18)(19)(20)(21)(22)(23)(24)(25)(26) were relevant for this review, since they met the study question and pre-established criteria, as explained in the analysis flowchart ( Figure 1).…”

“…With regard to language, eleven studies analyzed were published in Portuguese (9)(10)(11)(18)(19)(20)(21)(23)(24)(25)(26) and from Brazilian authors, five were published in Spanish (12)(13)(15)(16)(17) and three in English (14,16,22) . Of the included studies, eight (9)(10)(11)(17)(18)(19)(20)(21) used the qualitative approach and ten, the quantitative (12)(13)(14)(15)(16)(22)(23)(24)(25)(26) . As for the instruments / techniques for data collection/production, questionnaires, interviews, observation, discussion groups and application of scales were used.…”

“…A new measure of home care patients' dignity at the end of life: The Palliative Patients' Dignity Scale (PPDS ¶ ) (16) Palliative and Supportive Care/ Spain Sick people at the end of life: experiences in the accessibility to social health resources (17) Enfermería Universitaria / Spain (In defense of) Palliative Care in Primary Health Care (18) O Mundo da Saúde / Brazil Justino ET, Kasper M, Santos KS, Quaglio RC, Fortuna CM Perception of family members and health professionals about end-of-life care in the context of primary health care (19) Ciência & Saúde Coletiva / Brazil -Qualitative -Interviews…”

“…Interface between social support, quality of life and depression in users eligible for palliative care (25) Revista The context of the studies was variable. Several experiences were found, such as: in daily life and patient care at home (9,19) ; meaning of being a caregiver and on PC (10,11) for health professionals; evaluation of tumor asthenia (12) ; validation and application of a tool for prognosis (13) ; identification and characterization of patients in PC and services (14,22,24,26) ; pain evaluation (15) ; assessment of dignity at the end of life (16) ; difficulties in accessing PCs (17) ; the work process in PHC (18) ; perspectives of occupational therapists in PC in PHC (20) ; ethical problems (21) ; comfort of caregivers of patients in PC (23) ; relationship between social support, quality of life and depression in PC patients in PHC (25) (Figure 3).…”

New measures to capture end of life concerns in Huntington disease: Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient-reported outcomes measurement system)

“…Several measures exist which were originally intended to measure HRQOL, but these measures were either developed for use in other diseases such as cancer, (e.g., revised Hospice Quality of Life Index [13]; Death and Dying Distress Scale [14; 15]; McGill Quality of Life Questionnaire [16; 17]; QUAL-EC [18]) or are overly generic (e.g., CANHELP Lite [19]; EOL-PRO [20]; the Missoula-VITAS quality of life index [21]; Palliative Patients’ Dignity Scale [22]; Patient Needs Assessment in Palliative Care [23]; Valuation of Life [24]; QUAL-E [25]). These tools do not capture EOL concerns specific to HD (e.g., concerns related to watching other family members suffer from and die from the disease; concerns about the burden of having HD places on other family members; concerns about your children inheriting the disease from you; the fact that there is a gene test that can accurately predict who will get symptoms, but not when), take too long to implement (i.e., the CANHELP [26]), and/or include substandard psychometric properties [6-8].…”