Unmet needs from the first diagnosis of cancer until the end of medical treatment: A longitudinal study

2020 ◽  
Author(s):  
Yuhan Gao ◽  
Lei Zhu ◽  
Juan Xie ◽  
Ailan Liu ◽  
Yanni Ding ◽  
...  
Keyword(s):  
Longitudinal Study ◽  
Medical Treatment ◽  
Unmet Needs ◽  
Diagnosis Of Cancer ◽  
First Diagnosis

Current Status of the Neurobiology of Alzheimer's Disease and the Importance of Early Diagnosis

2002 ◽  
Vol 8 (4) ◽  
pp. 596-597
Author(s):  
Edith V. Sullivan
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Longitudinal Study ◽  
Early Diagnosis ◽  
Medical Treatment ◽  
Accurate Diagnosis ◽  
Current Status ◽  
Age Related ◽  
Loss Of Dignity ◽  
Scientific Rationale

Alzheimer's disease—occurring upward of 15% of individuals age 65 and older—is the most prevalent age-related dementia. Since the late 1970s, neuropsychologists have been instrumental in identifying patterns of sparing and impairment of cognitive, sensory, and motor functions and rates of declines in selective functions. Anyone who has engaged in longitudinal study of AD and anyone of that large segment of the population with relatives suffering with AD has witnessed first-hand the relentless, irreversible demise of function and ultimate loss of dignity characteristic of AD's course. The approach of Scinto and Daffner's edited book, Early Diagnosis of Alzheimer's Disease, avoids rehashing the already established descriptions of AD and provides firm, scientific rationale for the meaningfulness of early and accurate diagnosis of AD despite its current dire prognosis and lack of effective medical treatment.

scholarly journals Caregiving Through Turbulent Times: Findings From the MIT AgeLab’s Longitudinal Study of Family Caregivers

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 185-185
Author(s):  
Julie Miller ◽  
Julie Miller
Keyword(s):  
Longitudinal Study ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Technology Use ◽  
Unmet Needs ◽  
Future Research ◽  
Turbulent Times ◽  
The Face ◽  
Research Questions ◽  
Adult Family Member

Abstract Nearly one in five Americans is an unpaid family caregiver, and the need for family caregivers is projected to grow over the next several decades in the face of longer lifespans (AARP 2020). Yet the increasing centrality of family caregivers for providing care to an aging population highlights two knowledge gaps: first, the degree and experience of burden and stress caregivers manage around balancing care with other family and work responsibilities; and second, a lack of knowledge about the caregiver journey and the microtasks of care, including how caregivers leverage – or not – different tools, technologies and resources to support the care they provide. To develop a deeper understanding of these questions and others, the MIT AgeLab has built a research panel of over 1200 caregivers providing care to another adult family member. This symposium will present findings from the MIT AgeLab Caregiver Panel, including: 1) an examination of the extent to which family caregivers identify as such and how they feel about their roles; 2) how family caregivers experienced the COVID-19 pandemic both personally and around the care they provide; 3) caregivers’ use of and attitudes toward technology to support the care they provide; and 4) what caregivers identify as their key unmet needs. The session will include a facilitated discussion around the intersection of COVID-19 with caregivers’ technology use, experience of caregiving, and future needs, as well as to identify additional research questions and directions for future research with the MIT AgeLab Caregiver Panel.

scholarly journals Caring for women with ovarian cancer in the last year of life: A longitudinal study of caregiver quality of life, distress and unmet needs

2014 ◽  
Vol 132 (3) ◽  
pp. 690-697 ◽  
Author(s):  
Phyllis N. Butow ◽  
◽  
Melanie A. Price ◽  
Melanie L. Bell ◽  
Penelope M. Webb ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Ovarian Cancer ◽  
Longitudinal Study ◽  
Unmet Needs ◽  
Caregiver Quality

Understanding Patients’ Attitudes Toward Cancer Multidisciplinary Meetings: A Mixed Methods Study

2020 ◽  
Vol 16 (2) ◽  
pp. e175-e182
Author(s):  
Bianca Devitt ◽  
Jennifer Philip ◽  
Madhu Singh ◽  
Sue-Anne McLachlan
Keyword(s):  
Mixed Methods ◽  
Medical Treatment ◽  
Treatment Plan ◽  
Quality Care ◽  
Treatment Modalities ◽  
Evidence Based ◽  
Theory Approach ◽  
Previous Diagnosis ◽  
Diagnosis Of Cancer ◽  
A Current

PURPOSE: Multidisciplinary cancer meetings (MDMs) are an integral component of quality care; however, little research exists regarding patients’ views on this model of care. We aimed to explore and understand the attitudes of patients toward MDMs. METHODS: A mixed methods exploratory design was used. Qualitative data from patients with a current or previous diagnosis of cancer were collected and analyzed using a grounded theory approach. Results informed the development of a questionnaire survey that was administered to patients with a current or previous diagnosis of cancer. Results were analyzed using descriptive statistics. RESULTS: Nine patients participated in 3 focus groups, and 152 patients (response rate, 90%) completed the questionnaire. Patients were strongly supportive of MDMs and thought that all patients with cancer should be routinely discussed. More than 90% of surveyed patients believed MDMs were reassuring, meant all treatment modalities were considered, and led to evidence-based treatment recommendations. Patients wanted MDMs to focus on medical treatment planning rather than psychosocial issues, and 87% regarded the meeting as confidential. Patients described a preference for doctor-led decision making, and most (84%) wanted MDM treatment decisions to be discussed with them in a subsequent consultation, with 73% of patients also wanting this in a written format. CONCLUSION: Patients strongly endorse MDMs as a means to develop an evidence-based, medical treatment plan agreed to by consensus. They want to be purposely informed of the meeting and its outcomes. Results from this study can help inform future guidelines on the conduct of MDMs.

scholarly journals In My Hours of Need, I Was Robbed of My Family, Friends, Beliefs, and Education. A Mother’s Narrative on Her 14-Year-Old Daughter’s 9-Month Journey From Ill Health to Death

2017 ◽  
Vol 28 (2) ◽  
pp. 158-174
Author(s):  
David Bara
Keyword(s):  
Quality Of Life ◽  
Chronic Illness ◽  
Medical Treatment ◽  
Methodological Approach ◽  
Diagnosis Of Cancer ◽  
The Impact

The study utilized a highly qualitative, narrative, and free associative methodological approach to give a mother’s perspective of her teenage daughter’s 9-month journey from diagnosis of cancer to her death. Cancer is a unique chronic illness that impacts both physically and psychologically. The key findings of this study show that medical treatment alone is not enough and that professionals must understand the impact that cancer and the treatment have on the quality of life for the child and how the phrase surviving cancer has different meanings. It highlights the importance that family, friends, beliefs, and education have on supporting a teenager and the consequences of denying that access to all stakeholders.

scholarly journals Distress and unmet needs during treatment and quality of life in early cancer survivorship: A longitudinal study of haematological cancer patients

2017 ◽  
Vol 99 (5) ◽  
pp. 423-430 ◽  
Author(s):  
Devesh V. Oberoi ◽  
Victoria M. White ◽  
John F. Seymour ◽  
H. Miles Prince ◽  
Simon Harrison ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Longitudinal Study ◽  
Cancer Patients ◽  
Cancer Survivorship ◽  
Unmet Needs ◽  
Early Cancer ◽  
Haematological Cancer

scholarly journals Participants Attrition in a Longitudinal Study: The Malaysian Cohort Study Experience

2021 ◽  
Vol 18 (14) ◽  
pp. 7216
Author(s):  
Noraidatulakma Abdullah ◽  
Mohd Arman Kamaruddin ◽  
Ying-Xian Goh ◽  
Raihannah Othman ◽  
Andri Dauni ◽  
...  
Keyword(s):  
Cohort Study ◽  
Longitudinal Study ◽  
Medical Treatment ◽  
Drop Out ◽  
Attrition Rate ◽  
Kuala Lumpur ◽  
Study Participation ◽  
Study Objective ◽  
Study Experience

The attrition rate of longitudinal study participation remains a challenge. To date, the Malaysian Cohort (TMC) study follow-up rate was only 42.7%. This study objective is to identify the cause of attrition among TMC participants and the measures to curb it. A total of 19,343 TMC participants from Kuala Lumpur and Selangor that was due for follow-up were studied. The two most common attrition reasons are undergoing medical treatment at another government or private health center (7.0%) and loss of interest in participating in the TMC project (5.1%). Those who were inclined to drop out were mostly Chinese, aged 50 years and above, unemployed, and had comorbidities during the baseline recruitment. We have also contacted 2183 participants for the home recruitment follow-up, and about 10.9% agreed to join. Home recruitment slightly improved the overall follow-up rate from 42.7% to 43.5% during the three-month study period.

scholarly journals Distress, anxiety, depression and unmet needs in thyroid cancer survivors: a longitudinal study

Endocrine ◽  
2021 ◽  
Author(s):  
Margherita Dionisi-Vici ◽  
Marta Fantoni ◽  
Rossana Botto ◽  
Alice Nervo ◽  
Francesco Felicetti ◽  
...  
Keyword(s):  
Thyroid Cancer ◽  
Longitudinal Study ◽  
Life Events ◽  
Unmet Needs ◽  
Short Form ◽  
Depression Scale ◽  
Psychological Needs ◽  
Stressful Events ◽  
Anxiety And Depression ◽  
Anxiety Depression

Abstract Purpose Despite a good prognosis, thyroid cancer (TC) survivors often report psychological distress and decreased quality of life. This longitudinal study aims to evaluate TC survivors’ levels of distress, anxiety, depression and unmet needs, checking potential life events. Methods Distress Thermometer, Hospital Anxiety Depression Scale, Supportive Care Need Survey (short form) and Interview for Recent Life Events were administered to 73 TC survivors (T0) and 44 of them were re-tested one year later (T1). Participants were at 0–5, 5–10 or >10 years from the end of their cancer-related treatments. Results At T0, distress, anxiety and depression mean scores were 6.4, 6.8 and 5.3, while at T1 they were 5.5, 4.8 and 5.1. Only anxiety scores decreased significantly between T0 and T1. 50.7% of patients had unmet psychological needs at T0 and 50.0% at T1. Most participants were satisfied in the communicative/ informative (T0:79.5%; T1: 77.3%) and social/health care areas (T0:74.0%; T1:75.0%). The most experienced stressful events detected concerned their working areas. Conclusions Results confirmed that patients reported distress, anxiety and depression concerns even many years after the end of treatments. Both medical and psychological surveillance are relevant to improving TC survivors’ wellbeing.

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