The initial search yields 2383 results (see Fig. 1). A total of 72 full-text articles were assessed, and 36 articles were excluded with reasons (see Fig. 1). A total of 36 studies fully met the inclusion criteria of which there were five qualitative [21, 31,32,33,34], 30 quantitative [15, 18, 20, 22,23,24, 35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58], and one mixed methods [59] which underscores that this is a developing evidence base (see Table 2). Studies were conducted in the UK (5), the USA (5), Canada (4), Germany (4), Norway (4), Australia (3), Denmark (2), Italy (2), the Netherlands (2), Turkey (2), Greece (1), Lebanon (1), Serbia (1), and Sweden (1). The sample sizes of the included studies varied widely; 16 studies had < 100 participants, 17 studies had ≥ 100 participants, two studies had > 500 participants, and one failed to report how many participants were included [33]. The average age of study participants varied from 25.1 to 44.4 years, and most of the participants had localised disease compared to metastatic disease. Treatments also varied, but most participants were treated by either orchiectomy or orchiectomy and chemotherapy. Although some underwent surveillance, radiotherapy, and/or retroperitoneal lymph node dissection (RPLND) were reported, most of the participants were married, were in full-time employment, and had at least secondary education or higher. Therefore, the participants in this review are not representative of other minority groups (see Table 3 for the results of the methodological quality assessment). Most of the studies were cross-sectional in design and therefore provide little information about how supportive care needs change over time. The studies had small sample sizes and used convenience sampling approaches.

PRISMA 2020 flow diagram for new systematic reviews which included searches of databases, registers, and other sources

The frequency of unmet supportive care needs varied within and between studies (see Table 4). In descending order of frequency of need, psychological needs were identified in 26/36, physical needs 18/36, interpersonal/intimacy needs 19/36, health system/information needs 11/36, cognitive needs 9/36, social needs 7/36, and of equal frequencies (4/36) for family, practical, and patient-clinician information needs. Only one study explored spiritual needs [51], and no daily living needs were identified.✔

Individuals affected by testicular cancer commonly reported unmet psychological/emotional needs. Stress [15, 23, 36, 37], anxiety [23, 43, 45, 51, 53, 54, 57], depression [23, 39, 43, 45, 54], fear of recurrence [23, 37, 38, 41, 59], and body image issues [15, 32, 37, 38, 52, 58] were commonly experienced. Timely intervention for emotional support [23, 32, 37, 59], coping with threats to masculinity [23, 24, 31] and counselling for issues about infertility were needed [32, 33]. Men were embarrassed to disclose concerns about the signs and symptoms of testicular cancer [31], sexual functioning [34], and apprehension to share their diagnosis to the people in their lives [21, 33]. Other challenges included their own self-regulation of managing their own expectations of being a “cancer survivor” [15, 23, 37], how to move on with their lives [15, 23, 37], a lack of emotional support [15, 23], and sadness [20, 32]. Overall, studies reported negative impacts on mental health, reduced emotional functioning, low mental component summary scores [23], and reduced emotional vitality [39].

“…the bounce back from this was something that I couldn't cope with emotionally because I've never really dealt with a lot of emotions … I'm a guy … you need to be strong and that's what I was taught and you just deal with it and suck it up …” (page e16) [59]

Across the studies, there were a range of physical needs which required self-management support from healthcare professionals. Commonly, testicular cancer survivors experienced fatigue [20, 39, 41, 59], lack of energy [20, 54], drowsiness [20, 54], pain [20, 23, 43], hair loss [15, 20], and sleep disturbances [20, 54]. Men grappled with chemotherapy-induced alopecia and reported needing help with hair loss, but was not provided with any support or education on preventative strategies, such as scalp-cooling [15].

“Losing my hair was probably more devastating than losing my testicle I think. Because I went from liking my hair to having none in about three days. And that was a big adjustment. Even though a lot of guys you see on the street shave their head, and have short hair when it first happened midway through the chemotherapy … I hadn’t shaved in three or four days or whatever, it was just falling off. That was probably as devastating as anything, for me. It was just like, ‘wow’ (Participant 1)” (page 742) [31].

Other less commonly experience symptoms but still caused distress among testicular cancer survivors included itching, cough, sweats, shortness of breath, dizziness, skin changes, mucositis, numbness and tingling, feeling bloated, changed taste, urination difficulties, diarrhoea, and constipation [20]. Additionally, there were problems with fertility [23, 38, 41, 58], hypogonadism [43, 45, 46], higher white matter hyperintensities and radial kurtosis [52], and low testosterone [38] were reported. Chemotherapy-induced consequences such as obesity, peripheral sensory neuropathy, renal disease, tinnitus, hearing loss, Raynaud phenomenon, and autonomic neuropathy were frequently experienced. However, long-term conditions such as hypertension, thromboembolism, hypocholesteraemia, peripheral artery disease, diabetes, thyroid disease, coronary artery disease, transient ischaemic attack, and stroke were identified less frequently in this young population [43]. Testicular cancer survivors were found to have lower mean vitality, physical functioning, physical role functioning, and general health when compared to the general healthy population [23]. Men had physical concerns related to having one testicle which was intertwined with psychological consequences and intimacy concerns [