Asia-Pacific Journal of Oncology Nursing

REVIEW ARTICLE
Year
: 2021  |  Volume : 8  |  Issue : 1  |  Page : 5--17

Unmet Supportive Care Needs of Patients with Hematological Malignancies: A Systematic Review


Ioanna Tsatsou1, Theocharis Konstantinidis2, Ioannis Kalemikerakis3, Theodoula Adamakidou3, Eugenia Vlachou3, Ourania Govina3,  
1 Oncology-Hematology Department, Hellenic Airforce General Hospital, Heraklion, Greece
2 Department of Nursing, Hellenic Mediterranean University, Heraklion, Greece
3 Department of Nursing, University of West Attica, Athens, Greece

Correspondence Address:
RN, MSc, PhD(c) Ioanna Tsatsou
Hellenic Airforce General Hospital, Athens
Greece

Abstract

Hematological malignancies require intensive and long-term treatment, which brings a significant burden on patients, leading to unmet supportive care needs. The purpose of this review was to investigate the unmet supportive care needs of patients with hematological malignancies during and after active treatment as well as the factors that affect them. A systematic bibliographic search was carried out in the PubMed database for English articles published between 2009 and 2020 according to the Preferred Reporting Items for Systematic Reviews guidelines and under the terms: “unmet needs”, “supportive care”, “hematological malignancy” and “hematological cancer.” Twenty studies were evaluated and reviewed. Hierarchical frequently reported unmet supportive care needs were informational, emotional, physical, daily living/practical (accessibility, transportation, and financial problems), and family life/relational needs. In particular, patients with multiple myeloma most frequently reported unmet needs at the informational, physical, emotional, and daily living/practical domain. Patients with myelodysplastic syndromes reported physical, emotional, practical, and relational needs. Patients with leukemia and lymphoma rated their needs as informational, physical, psychological, daily living, and sexual. Sexual and spiritual unmet needs were reported at a low level. Predictive indicators for increased unmet supportive care needs were the type of the hematological malignancy, younger age, marital status, female gender, monthly income, coexistence of anxiety and depression, and altered quality of life. To conclude with, the literature reports a significant number of unmet supportive care needs in patients with hematological malignancies, whose frequency and intensity were influenced by a variety of factors. However, the large heterogeneity of studies (design, sample, and needs assessment tools) makes the generalization of the results difficult.



How to cite this article:
Tsatsou I, Konstantinidis T, Kalemikerakis I, Adamakidou T, Vlachou E, Govina O. Unmet Supportive Care Needs of Patients with Hematological Malignancies: A Systematic Review.Asia Pac J Oncol Nurs 2021;8:5-17


How to cite this URL:
Tsatsou I, Konstantinidis T, Kalemikerakis I, Adamakidou T, Vlachou E, Govina O. Unmet Supportive Care Needs of Patients with Hematological Malignancies: A Systematic Review. Asia Pac J Oncol Nurs [serial online] 2021 [cited 2020 Dec 4 ];8:5-17
Available from: https://www.apjon.org/text.asp?2021/8/1/5/300113


Full Text



 Introduction



Hematological malignancies are a heterogeneous group of diagnoses, often grouped as Hodgkin versus non-Hodgkin lymphoma, lymphoid versus myeloid leukemia, and acute versus chronic disease.[1],[2] They are often aggressive, requiring urgent, prolonged, and demanding treatment. Many hematological cancer patients, particularly those suffering from lymphoma and myeloma, experience psychological distress and poor quality of life throughout their illness trajectory.[3],[4],[5] Moreover, hematological cancer has an impact on multiple aspects of a person's life, resulting in fatigue; anxiety and depression; spiritual concerns; and social life disruptions, such as limited leisure time, absence of a supportive family environment, transportation and financial issues, and effects on patients' employment.[3] Therefore, they report increased supportive care needs that require high-quality care in the domains of psychosocial, informational, and relational perspective.[6],[7] In particular, these patients have high unmet psychosocial and many other supportive care needs. Factors that induce these needs are younger age, female gender, employment, and altered quality of life.[3],[7] Understanding their needs is a crucial step to design effective care plans for improving not only their satisfaction but also their quality of life.

The term “supportive care needs” is an umbrella term covering the physical, informational, emotional, practical, social, and spiritual needs of a person affected by cancer.[7] Unmet supportive care needs are those which lack the level of service or support that a patient perceives as necessary to achieve well-being.[8],[9] Assessment of unmet supportive care needs can encompass worries across a broad range of domains, reflecting the multidimensional impact of cancer.[8]

In the past, researchers reviewed the supportive care needs[3] and the unmet psychosocial needs[7] in patients with hematological malignancies. The aim of this review was to explore the relevant literature regarding (a) the types of the perceived unmet supportive care needs of patients with hematological malignancies during and after active treatment and (b) the factors (demographical, clinical) that affect the appearance of these needs.

 Methods



This systematic review was based on Preferred Reporting Items for Systematic Reviews (PRISMA) guidelines.[10] A search was conducted throughout the PubMed database (June 19, 2020). The inclusion criteria for studies revealed using the following terms: unmet needs, supportive care, haematological malignancy, hematological malignancy, haematological cancer, hematological cancer (unmet needs AND supportive care AND [hematological malignancy OR haematological malignancy OR hematological cancer OR haematological cancer]) were as follows: studies published between 2009 and 2020, in English, in peer-reviewed journals, and restricted only to adults (>18 years of age).

In addition, reference lists of relevant articles were screened. Studies were excluded if they were reviews, guidelines, letters, expert opinions, books, chapters, and studies that included mixed populations with hematological malignancies and solid tumors and solely transplanted patients. All studies were evaluated independently by two co-authors according to the title and summary, while for studies that met the inclusion criteria, a full text was retrieved.

A total of 49 articles were initially identified on the PubMed database, and five articles were identified after further investigation of the reference lists of the selected studies [Figure 1]. First, 29 articles were excluded after screening the titles/abstracts. In particular, two review articles and 27 research articles of nonrelevance to the subject and the inclusion criteria were excluded. From the remaining 25 articles, five were excluded after the full-text assessment[11],[12],[13],[14],[15] because of nonrelevance to the end points of the study. Finally, twenty studies that met all the inclusion criteria were included in this review [Table 1].{Figure 1}{Table 1}

Moreover, the final twenty studies were evaluated based on the scientific levels of evidence from the Agency for Healthcare Research and Quality (AHRQ)[36] [Table 2]. In particular, no studies of Levels I and V were identified. Three studies were evaluated at Level II,[22],[23],[24] 12 studies were evaluated at Level III,[16],[18],[26],[27],[28],[29],[30],[31],[32],[33],[34],[35] and five studies at Level IV.[17],[19],[20],[21],[25]{Table 2}

In this review, we considered the terms of patients and survivors of hematological malignancies identical following the definition of the National Cancer Institute that a cancer survivor “is someone who remains alive and continues to function during and after facing a serious or life-threatening illness. In cancer, a person is considered a survivor from the time of diagnosis to the end of life.”[37]

The unmet supportive care needs were classified in the following nine clinically and empirically driven domains, but also research guided:[6],[38],[39] informational/educational, physical/cognitive, psychological/emotional, social, daily living/practical (unmet needs for accessibility, transportation, and financial problems), family-related/relational, health system related (communication between health professionals and patients), interpersonal/intimacy needs (unmet needs for sexuality, loss of fertility, and altered body image), and spiritual/religious needs.

 Results



Twelve cross-sectional studies,[16],[18],[26],[27],[28],[29],[30],[31],[32],[33],[34],[35] three prospective studies,[22],[23],[24] one retrospective study,[17] and four qualitative studies[19],[20],[21],[25] were included. Studies were mainly single centered. There was a heterogeneity in the sample of the studies. Seven studies included patients with all the hematological malignancies (lymphoma, leukemia, and myeloma),[16],[18],[28],[29],[30],[31],[35] three studies included patients with diffuse large B-cell lymphoma and myeloma,[22],[23],[24] three with acute leukemia,[19],[26],[32] three with lymphoma,[20],[25],[27] two with myeloma,[21],[34] one study included patients with myelodysplastic syndromes,[17] and one with leukemia and lymphoma.[33]

There were also many questionnaires used for the assessment of the supportive care needs. The most frequently scales used were the Survivor Unmet Needs Survey (SUNS)[40] and the Supportive Care Needs Survey-Short Form (SCNS-SF34).[41] Moreover, a cultural diversity of the samples is observed. There is a mass representation of the Australian population,[21],[22],[23],[24],[25],[28],[29],[30],[31],[35] followed by patients from the USA and Canada.[17],[19],[32],[33] Two studies were conducted in the UK,[20],[34] and one study in Greece,[16] China,[26] and Korea.[27]

The main characteristics of the examined articles were authors, country, research question, method (study design, sample, sampling, and setting), questionnaires used and assessments performed, results regarding the unmet supportive care need domains, and limitations [Table 1]. The results obtained from the studies were considered statistically significant at P = 0.05 in the statistical analysis. The studies investigated the following, regarding the unmet supportive care needs of the patients:

Categories of unmet supportive care needs

Hierarchical higher reported unmet supportive care needs were informational/educational, psychological/emotional, physical, daily living/practical needs, and family related.[16],[17],[20],[21],[22],[23],[24],[25],[26],[27],[28],[29],[30],[31]

The most frequently reported categories of needs in various studies were informational/educational which ranged from 24% to 55%.[16],[18],[23],[24],[26],[27] Patients were mostly concerned about obtaining information about their future condition.[16],[19],[21],[25],[27],[28] At the psychological/emotional health domain, unmet needs were reported at 17%–37% of patients and were correlated with distress, worry, anxiety, and depression.[18],[23],[24],[29],[30],[31],[32],[33],[34] In the physical needs domain, the most frequently reported symptoms were fatigue,[17],[18],[19],[21],[28],[29],[30],[31],[34] memory problems,[18],[29],[30],[31],[34] pain, sleep disturbances, and tingling hands and feet.[17],[21],[34] Health system-related needs (care co-ordination, communication between doctors, and the need for a case manager) were present at 32%.[35]

Zimmermann et al.[32] assessed physical and psychological symptoms in patients with acute leukemia that have been dealt with inadequately. The most common physical symptoms were lack of energy, drowsiness, dry mouth, weight loss, and pain. The most prevalent psychological symptoms were sleep disturbances, worry, inability to concentrate, and feeling sad.[32] In Yu et al.'s study,[26] a high number of unmet needs were informational, followed by needs in the psychological domain, regarding patients with acute leukemia. Whereas, Boucher et al.[19] found the following unmet needs in their qualitative study on high-risk leukemia patients: physical, psychological, uncertainty regarding prognosis and support.

Leukemia and lymphoma survivors[33] rated their unmet needs as sexual (41%), daily living/practical (handling medical and living expenses, 38%; employment, 32%; and health insurance, 30%) and having emotional difficulties (37%). Informational (24%), physical (30%), psychological (30%), daily living/practical (30%), and sexuality needs (9%) were also recorded as the most prevalent among lymphoma and myeloma patients.[22],[23],[24] In addition, psychological, physical, and daily living unmet needs were present for 15 months post diagnosis.[22]

Two qualitative studies interviewed lymphoma patients.[20],[25] Common themes emerged from both studies. Informational needs were the most common followed by emotional/psychological, health system related, and family related/relational needs. Kim et al. concluded on the same categories of needs for lymphoma survivors, through a quantitative study.[27]

The most common unmet supportive care needs of multiple myeloma (MM) patients[34] were daily living/practical (accessibility of hospital car parking and obtaining life and/or travel insurance) and managing their disease-related concerns. Nearly 27% of the patients reported signs of anxiety and 25% reported signs of depression. When interviewing MM patients,[21] the unmet needs reported were informational, health system related, physical, psychological, support, and family-life/relational. In addition, patients with myelodysplastic syndromes[17] reported most frequently physical, emotional, practical, and family-related problems.

Low number of unmet sexual needs were reported (3.5%–9%),[23],[24],[26] except one study,[33] reporting a significant percentage (41%). Similarly, low number (12%)[16] or absence (only one report)[17] of spiritual needs was also reported. Finally, in one study, patients stated that at the first year after treatment, they needed help to manage their fear of recurrence (73%).[35]

Associations with demographic and clinical factors

Factors that induce a high number of unmet needs in multiple domains, across patients with hematological malignancies, included younger patients,[26],[27],[28],[31],[33],[35] marital status,[26],[27],[33],[35] female gender,[28],[31],[33] employment-monthly income,[26],[27],[28],[31],[33],[35] depression, and anxiety.[18],[22],[23],[24],[29],[30],[34] The therapy itself, the use of growth factors, the receipt of red blood cells, and platelets were associated with greater levels of distress.[17] In addition, acute and chronic leukemia patients expressed more unmet needs than those with other hematological malignancies.[16]

Unmet psychological needs were associated with informational, physical, and daily living needs;[22],[23],[24] past psychiatric history; disease type (acute lymphocytic leukemia,[32] MM[22]); rurality;[18] monthly income; performance status; and treatment stage.[26]

Unmet physical needs were strongly correlated with depression[22],[23],[34] and poorer functional status,[32] whereas patient care needs were associated with physical and social well-being, overall quality of life,[22],[23],[24] monthly income, performance status, treatment stage,[26] and treatment side effects in MM patients.[21],[22],[34]

Unmet financial needs, lack of access, and continuity of care were associated with long traveling to treatment (>1 h).[18] Financial burden as a result of cancer effects (e.g., having exhausted savings and difficulties of dealing with daily expenses due to cancer) was consistently identified as a characteristic associated with the three most prevalent “high/very high” unmet needs (psychological/emotional, daily living, and family/relational).[29],[30],[31] Survivors who had relocated due to their cancer, had difficulty paying bills, had used up their savings as a result of cancer, were classified as having above-normal symptoms of depression and stress, and had statistically significantly higher odds of reporting seven or more “high/very high” unmet needs.[29],[30],[31] Health system-related needs (care co-ordination) were linked with younger age, active employment, and being close to treatment completion.[35]

Sexual needs were related with younger age, the stage of treatment, and whether the therapy was initial or not.[26] Informational needs were associated with marital status, performance status, treatment stage,[26] and patient satisfaction.[16] The less satisfied patients reported more informational needs about their diagnosis, future condition, exams, and treatments. They also reported health system-related needs (communicative, assistance, treatment, and hospital infrastructure needs).[16] Individuals who had experienced a recurrence reported more unmet needs related to family than patients who had not experienced recurrence.[33] Participants with unmet needs demonstrated significantly poorer quality of life, especially in social and emotional function.[27] Moreover, unmet supportive care needs seemed to be similar with small differences in survivors of hematological malignancies across different geographical regions.[31]

 Discussion



This systematic review analyzed twenty studies evaluating the unmet supportive care needs of patients with hematologic malignancies. The findings demonstrate the variety and the abundance of the unmet supportive care needs of patients affected by hematological malignancies across different aspects of life. Prevalent needs were mainly informational, followed by psychological/emotional and physical needs. In terms of the physical ones, fatigue and memory loss appeared to be the most common.

\From the existing research on unmet supportive care needs of hematological cancer patients, younger age was associated with higher risk of reporting supportive care needs.[3] This also applies on the research on patients with solid tumors.[42] Similarly, according to the findings of our review, among other factors, younger age affects many domains of unmet needs.

Culture encompasses ideas, customs, social behavior, attitudes, and characteristics of a particular social group and influences on peoples' cancer beliefs. These beliefs are also affected by other economic, social, and health-related determinants,[43] shaping the report and kind of needs. However, the studies were conducted in different countries (Australia, the USA, Canada, Greece, the UK, China, and Korea), with diverse populations and cultural standards. The report of needs is clearly connected to culture, so, inevitably, some of them may have been overmentioned or underreported. It is obvious that cancer survivors' diverse cultural attributes certainly affect their behavior.[44]

Furthermore, informational needs of cancer patients are high and often not fulfilled. In a study of 4000 German cancer patients, the unmet informational needs were prevalent up to 48%. Patients who were less satisfied with the receiving information, reported higher levels of unmet needs, anxiety, depression, and lower level of quality of life.[45] Specifically, in patients with hematological malignancy, the perceived informational needs were moderate to high, up to 70%.[46] Almost all the reviewed studies have shown unmet informational needs up to 55%. The high percentage of informational unmet needs found in these studies should be under health-care professionals' consideration in order to fulfill them.

Unmet spiritual needs were reported only in two studies,[16],[17] but with low prevalence. Evidently, spirituality correlates to both culture and religion. It seems that all the three domains influence patients' perceptions of health and illness.[47] In fact, spiritual needs are common to several national, religious, and linguistic populations of cancer patients, but may differ on their cultural background. The impact of culture and religion on spiritual needs and expectations regarding cancer care is very complex. Health-care professionals need to evaluate each patient individually, considering that patients' preferences and reports may be influenced by religion, culture, or ethnicity.[48]

In addition, the unmet sexuality needs were reported with low prevalence[23],[24],[26] unlike the study of Parry et al.,[33] in which patients reported sexual needs at 41%. In this particular study, the researchers used “The Houts et al. service need inventory”[49] that includes only one item regarding sexuality: “Sexual issues (e.g.: sexual interest, activity, and satisfaction).” A general question like this can lead to invalid responses, whereas multiple and more specific questions may lead to more accurate answers. Other researchers[23],[24],[26] used the SCNS-SF34 that includes the following sex-related entries: change in sexual feeling, change in sexual relationship, and knowledge about sexual relationship. Moreover, in the study by Yu et al.,[26] conducted in China, both young age and stage of treatment significantly affected the sexual needs domain. This might be explained by the complex psychological status of a young adult facing a life-threatening disease. Earlier studies[50],[51] among young adults treated for non-Hodgkin lymphoma, reported higher levels of sexuality and/or fertility needs. In the reviewed studies, the type of hematological malignancy was not associated with unmet sexuality needs.

Regarding the type of hematological malignancy and the reported unmet supportive care needs, we found some discordances between studies especially for acute leukemia. The studies by Zimmermann et al.[32] and Yu et al.[26] examined patients with acute leukemia. The first study concluded that unfulfilled physical needs precede psychological needs, whereas the second concluded that unfulfilled information needs precede psychological needs. However, these studies used different instruments to assess the patients' needs. Zimmermann et al.[32] used the Memorial Symptom Assessment Scale which solely states a number of symptoms, whereas Yu et al.[26] used a tool specific for supportive care needs of people with cancer, the SCNS-SF34. Hence, a tool like this is conceptually more appropriate for the needs' assessment. Moreover, the qualitative findings obtained, derived from a single study,[19] included only high-risk acute leukemia patients (complex karyotype, over 60 years old, or had a secondary leukemia). These patients underwent more aggressive treatment, which might be the reason why they put the physical needs first and then the psychological ones.

Limitations of this review are the strict criteria used for the selection of studies, the heterogeneity of the studies regarding the study design, the sample and the measurement tools, and the relatively small sample of most studies, with the possibility of nonsignificant results due to a lack of statistical power (Type II error). The included studies in this review may be biased because unpublished studies have not been identified (publication bias). A number of methodological problems limit the applicability of the available research, which needs to be addressed.

On the other hand, we used the PRISMA[10] guidelines to conduct the review and evaluated the studies based on acknowledged scientific criteria (AHRQ).[36] Moreover, this article is the first systematic review of the literature of the last decade that focuses on the unmet supportive care needs of patients with hematological malignancies.

 Conclusions



Overall, this systematic review identifies some relatively similar areas of perceived unmet supportive care needs of patients with hematological malignancies. Unmet informational needs are at the top of the list, followed by psychological/emotional and physical needs. Nevertheless, the wide variation in study methodologies, sample characteristics, and needs assessment measures used in the reviewed studies, made the synthesis, analysis, and generalization οf the results difficult.

Future studies on the field of unmet supportive care needs should focus on specific types of hematological malignancies and patients with advanced disease. Research must also focus on needs such as sexual, psychological, and spiritual that are not well recognized and managed by health-care professionals. It is of note that there is a significant discordance between physician and patient perspectives of unmet needs.[52] This review could also guide health-care professionals to more easily recognize high-risk patients to report unmet supportive care needs. A clear understanding of the specific issues that are more important to this group of patients, through systematic assessment, will help to identify their most relevant concerns during treatment and design appropriate interventions in order to offer more individualized, high-quality care and subsequent patient satisfaction. The continuous investigation of the changing needs of this specific group of patients will contribute to their successful coverage.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

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