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NCT Number: NCT06393569

Sense of Security With Access to Palliative Outpatient Clinic

The aim of the study is to evaluate experience of security, accessibility, and avoidable utilization of health care services in patients who have had access to specialized palliative care clinic (SPCC) compared to those who have not, and to evaluate the relatives' experience of the care.

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Key information

Conditions

Age range

18 year–120 year

Sex eligibility

All sexes

Study type

Observational

Primary location

ASiH och palliativ vård Skåne

Lund, Sweden

Location status: Recruiting

Location contact

Sofia Persson, PhD-student

CONTACT

[email protected]

+46708652769

About this study

Palliative care aims to improve the quality of life for patients and families who are affected life-threatening, incurable disease. The concept of palliative care has changed over time and is not longer reserved for patients in the dying phase. More, and more studies show that early integration of palliative care and disease-specific care give positive results. Specifically, palliative care is about prevent and alleviate suffering by early detection of symptoms and treatment of physical, psychological, social and existential problems. In order to provide the best care, a holistic approach is required that takes up what is important right now for the patient, and not focus on only the diagnoses. The care should be person-centred, but it is not entirely clear how this is best achieved.

In an initiative for person-centered care, Palliative care and ASIH, Region Skåne, was the first region in the Sweden to established a new form of care; 'Palliative specialist outpatient clinic' (which was done in 2021). This initiative is a way to support patients who are still receiving disease-specific treatment at their home clinic, which are not specialized in the palliative care needs that may arise. At the same time, the patients do not have that great care needs that they need to be enrolled in specialized palliative care 24/7.

Patients are invited to the study in connection with enrollment at ASiH. All patients who are referred from Palliative specialist reception are consecutively asked about participation in the study. For each patient who previously had contact with the Palliative Specialist Clinic, a patient referred directly from disease-specific care/primary care will be included as to the control group.

Data collection will take place through a self-developed questionnaire where the patient is asked about his experience of security and accessibility in the last 3 months before enrollment in ASiH. Survey questions about safety and accessibility have been chosen as far as possible from among validated questionnaires. If the patient agrees, relatives will also be invited to answer a similar questionnaire. Data on health care consumption, diagnoses and symptoms are collected through Region Skåne's Vårddatabaser and journal review.

Who can participate

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • Patients admitted to included ASiH-unit

Exclusion criteria

  • Patients with cognitive impairment
  • Patients who cannot fill in a questionnaire in Swedish, Arabic or Serbo-Croatian.

Treatment and study plan

Primary outcomes

  1. Experience of security and continuity

    Time frame: 3 months

    Likert scale, 5-point scale where a higher value indicates higher sense of security and continuity.

Secondary outcomes

  1. Avoidable care consumption

    Time frame: 3 months

    Actual number of avoidable contacts with health care system (e.g., emergency department). Data will be collected by Region Skånes Vårddatabaser

  2. Readmissions to hospital.

    Time frame: 3 months

    Actual numbers of readmission. Data will be collected by Region Skånes Vårddatabaser

Study contacts

Contact information is provided by the study sponsor or research team.

Christel Hedman, MD PhD

CONTACT

[email protected]

Sofia Persson, PhD student

CONTACT

[email protected]

+46708652769

Sponsors and collaborators

Lead sponsor

Region Skane

Other

Registry information

Official study title

Experience of Security Having Access to Specialized Palliative Care Clinic

Important dates

Study start
2024
Primary completion
2028
Study completion
2029
First posted
May 1, 2024
Registry last updated
May 13, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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